Social Science & Medicine 228 (2019) 117–125

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Social Science & Medicine

journal homepage: www.elsevier.com/locate/socscimed

Don't look at it as a miracle cure: Contested notions of success and failure in T

family narratives of pediatric cochlear implantation
Laura Mauldin
Human Development & Family Studies, Women's Gender and Sexuality Studies, University of Connecticut, USA

A R T I C LE I N FO A B S T R A C T

Keywords: Cochlear implants (CIs) are a routine treatment for children identified with a qualifying hearing loss. The CI,
Deaf however, must be accompanied by a long-term and intense auditory training regimen in order to possibly ac-
Cochlear implant quire spoken language with the device. This research investigates families' experiences when they opted for the
Narratives CI and undertook the task of auditory training, but the child failed to achieve what might be clinically considered
Failure
“success” – the ability to function solely using spoken language. Using a science and technology studies informed
Disability
approach that places the CI within a complex sociotechnical system, this research shows the uncertain trajectory
of the CI, as well as the contingency of the very notions of success and failure. To do so, data from in-depth
interviews with a diverse sample of parents (n = 11) were collected. Results show the shifting definitions of
failure and success within families, as well as suggest areas for further exploration regarding clinical practice and
pediatric CIs. First, professionals' messaging often conveyed to parents a belief in the infallibility of the CI, this
potentially caused “soft failure” to go undetected and unmitigated. Second, speech assessments used in clinical
measurements of outcomes did not capture a holistic understanding of a child's identity and social integration,
leaving out an important component for consideration of what a 'good outcome' is. Third, minority parents
experience structural racism and clinical attitudes that may render “failure” more likely to be identified and
expected in these children, an individualizing process that allows structural failures to go uncritiqued.

1. Introduction understandings of both success and failure? Furthermore, how do the

In a broader context where health technologies have become in-
creasingly mobile and homecare demands individuals to become active
users (Lehoux et al., 2004), disabled people in particular are expected
to utilize technologies as part of a regimen of constant intervention to
reshape their abilities (Wolbring and Lashewicz, 2014). This research
investigates experiences with a specific technology, the cochlear im-
plant (CI), in family life when a child is deaf. It asks, “Is using tech-
nology at home really as straightforward as some policymakers and
providers assume it to be?… How do patients cope with the use of
specialized equipment in their lives?” (Lehoux et al., 2004).
Clinical CI literature primarily relies on evaluation of spoken lan-
guage communication to determine speech outcomes. Though not true
for all cases, the ability to solely use spoken language, as opposed to
sign language, for communication is often viewed as success (“good
outcome”), while the inability to do so associated with failure (“poor
outcome”) (Mauldin, 2016). This prompts the questions: For families
who have a child for whom the CI did not “work,” what does the pro-
cess of “failure” look like? What do their stories reveal and how can
they help us critically reflect on clinical measurements of outcomes and
experiences of marginalized families reveal the ways that larger struc-
tural and clinical environments may contribute to such ‘failures?’ To
address these concerns, this paper utilizes interview data from parents
for whom their child's CI outcome may be considered a “failure.” Using
a technologies in practice approach (Timmermans and Berg, 2003), the
CI is situated as contingent upon its social context, its trajectory un-
certain. “Understanding uncertain trajectories is important whatever
form they take. It raises the question of the relationship between what
agents believe (or hope) will happen if they initiate some process, and
what actually happens (or what they believe has happened) when the
process is initiated, and how agents then work to reconcile the two”
(May, 2013, p. 27).
The CI is a neuroprosthetic device surgically implanted to treat in-
dividuals who are deaf and have qualifying types of severe to profound
sensorineural hearing loss. In 2000, the Food and Drug Administration
lowered the minimum age requirement for CIs to twelve months,
though earlier implantation is performed “off label” at the discretion of
individual clinics (Miyamoto et al., 2017). Since these changes oc-
curred, the majority of CI recipients are children (Sorkin, 2013) and a
primary goal of implantation is to increase auditory perception to aid in

E-mail address: laura.mauldin@uconn.edu.

https://doi.org/10.1016/j.socscimed.2019.03.021
Received 16 May 2018; Received in revised form 5 March 2019; Accepted 12 March 2019
Available online 16 March 2019
0277-9536/ © 2019 Elsevier Ltd. All rights reserved.
L. Mauldin
the acquisition, development, and/or continued use of spoken language
(Geers, 2006; Peterson et al., 2010). Importantly, simply having the CI
implanted is not sufficient for spoken language acquisition in children if
that is the goal; long-term aural habilitation is required to learn to use it
and be able to communicate using spoken language. This is comprised
of a set of techniques, referred to broadly here as auditory training
(AT), that focus on optimizing sound recognition and perception, par-
ticularly for the purposes of developing spoken language, and speech
therapy to improve speech production. A multipronged approach, AT is
typically paired with the expectation to provide near constant ampli-
fication (i.e. wearing the CI at all times) and often to avoid exposure to
sign language (e.g. Geers et al., 2017; Clark, 2003).
This last requirement is one of significant controversy. Clinical
practices routinely reflect bias against the use of sign, yet “opposition to
sign language is not based on empirical evidence supporting the harm
of sign language exposure” (Hall, 2017, p. 962). And others have pro-
duced research showing sign facilitates speech and overall language
development in children with CIs (Davidson et al., 2014). Still others
argue that deaf children should not be denied sign language due to the
risks of language deprivation because the CI takes time to work and
may not work at all, concerns that appear in recent research (Hall,
2017; Hall et al., 2016; Henner et al., 2016) and in the data presented
here. As will be revisited later, “Language deprivation occurs due to a
chronic lack of full access to a natural language during the critical
period of language acquisition” (Hall, et al., 2017, p. 761), which is the
first five years of a child's life.
2. Literature on outcomes and notions of success/failure
When discussing outcomes of CIs in children, clinical literature
predominantly uses measures of production and comprehension of
spoken language through batteries of speech, language, and vocabulary
assessments and scales (e.g., Black et al., 2012). Some important factors
in achieving the ability to rely on spoken language have been identified,
such as early age of implantation (e.g., Boons et al., 2012), and con-
sistent and appropriate programming/mapping of the device and follow
up appointments post-implantation (Hemmingson and Messersmith,
2017). Another important factor is whether or not the child receives
sustained and intensive AT-informed interventions (e.g., Percy-Smith
et al., 2017). Professionals emphasize AT requires time and effort to see
progress (e.g., Archbold et al., 2008) and acknowledge that a wide
array of social variables come into play and affect outcomes (e.g.,
Cosetti and Waltzman, 2012). AT is understood as difficult and the need
to ensure equitable access, family partnership, and social and emotional
support routinely discussed (e.g., Moeller et al., 2013).
Despite this, however, limited clinical attention has been given to
deeply understanding the social and emotional aspects of implantation
for children and their families. Instead there has been “far more at-
tention on the communication modality over the years, namely whether
children use sign or speech” (Belzner and Seal, 2009, p. 313). Ad-
ditionally, the clinical narrative of implantation tends to be both
narrow and “neat,” which is reflected in media representation about CIs
as well. For example, a recent piece in the New York Times featured
prominent audiologists discussing the CI as a near total success all the
time, saying that deaf children with CIs “blend in so well with everyone
else that people don't realize there are so many deaf children” (Brody,
2018). And yet, “Medical professionals are not able to assure that
hearing aids and cochlear implants will result in positive language
outcomes. Many deaf children are significantly delayed in language
skills despite their use of cochlear implants” (Hall, et al., 2017, p. 762).
Meanwhile, clinical narratives often reflect a belief in the near infall-
ibility of CI technology and outline implantation as a logical progres-
sion of steps that, if families are compliant, lead to a positive outcome: a
child is diagnosed, intervention begins, the child (if a candidate, which
is dependent upon clinical testing, medical factors, and insurance
coverage) implanted, and long-term AT ensues. In previous
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Social Science & Medicine 228 (2019) 117–125
ethnographic research inside a CI clinic, it was found that the clinical CI
culture is marked by a generally held view that the CI is usually suc-
cessful, absent failure on the part of parents to do “enough” (Mauldin,
2016) or other co-morbid conditions. While this was only one clinic, the
salience of this finding has also been reflected outside of the clinic such
as in the recent statements of prominent audiologists in the New York
Times mentioned above and in the findings presented in this paper from
parents who frequented different clinics across more than four states.
Within the clinic, audiologists do, however, recognize the need to
manage expectations for parents, as they emphasize the time commit-
ment required and the well-documented presence of anxiety and stress
for parents children with CIs (e.g., Gilliver et al., 2013; Perold, 2001).
Furthermore, 40% of pediatric candidates who meet the audiologic
requirements for a CI also have an additional disability (Young et al.,
2016). If additional disabilities are present, expectations of spoken
language acquisition may be tempered, but working towards spoken
language acquisition still often seen as beneficial (Young et al., 2016).
The issue of additional disabilities in pediatric cochlear implantation,
however, is sorely under researched. To make matters more compli-
cated, there exists no comprehensive data on outcomes. There are no
national-level data that track and measure outcomes and demographics
of all children who receive CIs. This is lack of data contributes to a lack
of accountability for CI outcomes.
As part of an effort to better understand outcomes, there is one
national, longitudinal, multi-center study, but it does not inquire about
parent experiences or socioemotional factors (Fink et al., 2007). Of
note, one paper from the study showed exposure to sign language did
not harm, but also did not benefit, children with CIs when it came to
speech perception and intelligibility (Geers et al., 2017). They write
that “there was no advantage to parents' use of sign language either
before or after CI” (no pg.). “Advantage” here is narrowly construed; it
only applies to the speech testing not whether sign was advantageous in
other ways. There is an urgent need for family-level experiential data
that could suggest where misalignments between such narrow clinical
notions of success and failure and families’ experiences might lie.
Most literature on failure in pediatric implantation refers to device
failure (e.g. Sunde et al., 2013; Wang et al., 2014), which occurs in less
than 10% of cases. Ulanovski et al. (2017) describe such device failures
as “hard failures” having to do with demonstrable electronic dysfunc-
tion in the device. In contrast, “soft failures” are harder to identify,
especially in children, and take longer to evolve (in their study it took a
median of 25 months to diagnose and ranged as long as 54 months).
“Soft failure served as a working diagnosis, based on the presence of
such symptoms as shocking sensations, popping sounds, intermittency,
and unexplained progressive decrement in performance” (Ulanovski
et al., 2017, p. 108). Elsewhere, Moberly et al. (2013) call soft failure a
“working diagnosis” that includes “a failure to progress in language
development” (p. 1648) that may be indicated through behavioral
problems in children. Overall, what is still missing in the literature are
family-centered data addressing the alignment – or misalignment – of
clinical outcomes measures and their accompanying conceptualizations
of success or failure with families’ lived experience of the CI and de-
terminations of what constitutes success or failure.
Finally, Kirkham et al. (2009) surveyed clinicians regarding their
attitudes about disparities. Audiologists consistently identified socio-
economic status-related disparities in outcomes. The main reason cited
for poorer outcomes was parental “shortcomings,” such as a “lack of
involvement” (most often cited) and lack of adherence (next most often
cited) (Kirkham et al., 2009). In an ethnographic study of a CI clinic,
Mauldin (2016) revealed that race/ethnicity also played a role in
clinician attitudes about parents. Parents' immigration status or cultural
background potentially conflicted with audiologists' imaginations of
ideal CI candidates. “If another language besides English was spoken at
home or parents adhered to cultural norms from their home countries,
this was seen as a deterrent” to CI success (Mauldin, 2016, p. 81).
Clinicians also evaluated parents’ ability to stay consistent with AT,
L. Mauldin
emphasizing that those who are less committed to AT “tend to be for-
eign-born parents who have more cultural issues that start to come into
play” (Mauldin, 2016, p. 97). These examples suggest clinical ex-
planations for disparities in outcomes often rely on a deficit model. A
deficit model blames individuals or their families for unequal outcomes
with regard to race/ethnicity and/or SES (be it in healthcare, educa-
tional settings, and so on) because of a belief that their culture is dys-
functional or pathological (Salkind, 2008; Silverman, 2011). In other
words, it individualizes the failure, rather than critically accounting for
structural failures like unequal access to resources or bias in clinical
practice or even simply the failure of a technology to do the job we
want it to do.
3. Contingency, disability, and the technological fix
In contrast to the clinical literature, this research employs an STS-
informed approach, which attends to the ways technologies, bodies,
and social interactions constitute a sociotechnical system that is inter-
woven and contingent (e.g., Mol, 2008; Timmermans and Berg, 2003).
Social relationships, milieus, and interactions are non-linear, “messy,”
and situated within larger structural and cultural contexts. Thus,
technologies integrated into social worlds are subject to the complex-
ities, volatility, and inequities of broader social and emotional life.
“Contingency also means that things connect” (Lipartito, 2003, p. 77)
and one way to find out how they connect is through narrative work, as
narratives “reveal the “glue” of how they [connect]” (Lipartito, 2003, p.
77). Thus, this research views the CI as embedded and volatile - in this
case bound up in the bodies and brains of children, situated within
families who are nested within a larger social context. Through in-
corporating the social aspects and intimacies of family life into dis-
cussions of CI outcomes, this research expands what is relevant in de-
fining outcomes, success, and failure.
In his study of the picturephone, roundly considered a failure,
Lipartito (2003) notes that “What constitutes success or failure is more
a matter of social values and expectations than performance or func-
tioning” (p. 54). To better understand how values shape notions of
success and failure in CI outcomes, one must consider the dominant
cultural paradigm of disability. In this paradigm, disability is undesir-
able and to be avoided, with sign language being emblematic of dis-
ability in the particular case of deafness. This aligns with a medical
model of disability, which places the site of the “problem” on the in-
dividual body and construes disability as a “personal tragedy” (e.g.,
Oliver, 1990). In contrast, a social model of disability locates the pro-
blem in society – in its inaccessibility, exclusionary practices, and at-
titudes towards disability (Barnes et al., 1999; Oliver, 1990;
Shakespeare, 2006). The medical model, operationalized through the
medicalization of deafness, narrows the focus to the ear, brain, speech
perception, and speech production. This fits neatly with a technological
fix approach; locating the problem on the body positions the CI as the
fix. As Lehoux et al. (2004), point out, a “technological-fix response”
ignores social factors shaping the lives of disabled persons (in this case
deaf children and their families) and undermines subjective inter-
pretations or experience of impairment. As a result, “One may expect
that the providers' definition of what patients need may often prevail
over other types of accounts” (Lehoux et al., 2004, p. 621). In contrast
to the technological fix approach endemic to clinical literature, this
paper highlights the contingency and embeddedness of the CI through
privileging parents' accounts of the CI in family life. Parents, in a col-
lapsed parent/patient role on behalf of their child, are in a position to
provide such information, however there remains a dire need for future
research to investigate CI users’ accounts of their childhood with CIs.
4. Method
To investigate family experiences with the CI, semi-structured in-
terviews with families were conducted. Semi-structured interviews
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Social Science & Medicine 228 (2019) 117–125
were identified as the best method for gathering and examining fa-
milies’ narratives because they rely on guided questions relevant to the
research questions, but are flexible enough that participants are en-
couraged and allowed to discuss anything that they feel is relevant to
the questions (Creswell, 2013). Narrative research is based on the
supposition that humans use narratives to make sense of their experi-
ences (Smith and Sparkes, 2008). “We organize our experiences into
narratives and assign meaning to them through storytelling. Narratives
thereby help constitute and construct our realities and modes of being”
Smith and Sparkes (2008), p.18). Narratives also highlight how ex-
periences are situated within social structures and are culturally con-
tingent (Riessman, 1993). This method then privileges the experiences
of the families, not clinical accounts of events.
4.1. Recruitment and data collection
In order to investigate family experiences of the CI when its out-
come may be considered a failure, this research turned to a community
site for parent recruitment: the deaf school. Many deaf schools in the
United States, unless specifically an oral school (i.e. speech training
focused), use American Sign Language (ASL) as the language of in-
struction and social interaction outside of the classroom. Deaf schools
that use ASL for instruction in the US are part of a system that serves
disabled children, who are guaranteed the right to a Free and
Appropriate Public Education under the Individuals with Disabilities
Education Act (2004). This research turned to such a site because if the
notion of failure in CI outcomes is signaled through a child's need to use
sign, then finding those children may be easier at a school that provides
a sign language environment. Thus, parents of deaf children with CIs
enrolled in an educational context that used ASL was then used as a
proxy for finding those who might clinically be identified as “failure.”
Although there are other possible educational settings for deaf
children with CIs, this served as an expedient ‘hub’ for finding a po-
pulation of children with CIs that sign. Additionally, for many the deaf
school was not their first stop, but actually the last stop after a series of
educational placements. This provides the opportunity to garner re-
flection on different settings, rather than limiting narratives to being
solely about the deaf school. Furthermore, this research strategy pro-
vided the benefit of finding parents that had already been on a years-
long journey with the CI and could provide retrospective accounts. This
is because sign language is usually excluded as part of CI protocols and
therefore often relegated to a “last resort” method of communication
(Davidson et al., 2014; Hall et al., 2016; Henner et al., 2016; Peterson
et al., 2010). Collaboration was secured at the deaf school (referred to
as TDS for the remainder of this article) and their cooperation in-
tegrated into Institutional Review Board approval.
Materials were mailed to approximately thirty families in both
Spanish and English. These materials included information about the
study and a copy of the consent form. This form was gone over together
at the beginning of the interview and all participants were interviewed
after signing this document. Interviews were completed with parents
from eleven families and a brief survey was administered through
Qualtrics at the beginning of the interview in order to gather demo-
graphic data. More specifically, interviews included questions about
internal family factors (i.e., emotional, cultural, or other factors af-
fecting parents’ willingness and/or ability to adhere to the ongoing
demands of rehabilitation) and external family factors (i.e., social or
economic factors such as access to services and/or resources). The
survey included family data (e.g., income, education, marital status,
race/ethnicity, and zip code) and child demographic data (e.g., race/
ethnicity, date of birth, age of diagnosis, age of implantation, age of
enrollment, additional disability status). These data were later linked to
the interview transcripts so that demographic information on each
participant could be readily accessed. All parents were hearing and
used spoken language, interviews lasted on average 1 h, and they were
recorded using a digital voice recorder. In the event that the parents
L. Mauldin
spoke Spanish as their primary language, a Spanish translator fa-
cilitated the interview process.
4.2. Sample characteristics
TDS is located in a large city in the Northeast. In 2017, TDS had a
total enrollment of 158 students. Of their student population, 38% have
CIs, which is 61 students. Of these, 20 have additional disabilities or
health impairments. TDS did not disclose what types of disabilities or
health conditions these are. Of the 61 students with CIs at TDS, their
racial/ethnic make are as follows: 21 white, 19 Hispanic, 12 Black, 2
Asian and 6 multi-racial. The demographics of the deaf children with
CIs enrolled at TDS and whose parents were recruited into the study
were the following: 5 white, 4 Hispanic, 1 Asian, and 1 identified as
Middle Eastern. Slightly more than half of the study sample (6/11) did
not have any additional disabilities, while five of the eleven did have
additional disabilities. Three of these were developmental disabilities,
which may significantly impact their ability to utilize and optimize the
CI, a point taken up further in the paper. Two had learning disabilities
that parents did not believe affected their CI use. Data on deaf children
with additional disabilities are severely limited and this is an oppor-
tunity to suggest important issues to tease out in future studies.
Household income was distributed as follows: Six of the eleven families
had an annual household income that fell between $40,000 to $70,000,
two had an income of less than $25,000. Three families were in the
highest SES bracket, with an annual household income of more than
$99,000 and two of these were over $150,000.
4.3. Data analysis
All participants were given a participant number, their interview
transcribed using a transcription service, de-identified, and uploaded to
Dedoose. The small sample size allowed for an in-depth exploration of
the central phenomenon (Creswell, 2013). The aim of the research was
to explore what characterized parents' experiences and to give voice to
those often marginalized in clinical literature. To explore, describe, and
synthesize meaningful aspects of parents' experiences, the narrative
analysis here was paired with a modified grounded theory approach
(Charmaz, 2006). Using the aspect of grounded theory concerned with
inductive coding is particularly appropriate for exploratory research
when the researcher does not know what themes to expect. Ad-
ditionally, grounded theory informed approaches are well suited when
the aim of the research is not to impose preconceived categories onto
the narratives but rather to let the themes emerge directly from data. To
accomplish this, an inductive approach was used to first intensively
code all data line by line, then as the iterative coding process resulted in
splitting and lumping codes together, these built toward larger themes
(Saldana, 2015; Strauss and Corbin, 1990). This interpretive and in-
ductive process resulted in the themes presented below. However, the
theoretical framing of this paper, one which emphasizes technologies in
practice and the contingent nature of sociotechnical systems, comes
directly from the narratives and how families talked about the various
structural and cultural aspects that shaped their experiences with the
CI. Although this paper is grounded with critical STS and disability
literature, the methodological approach that used inductive, narrative
analysis lead to a more specific framing that highlights contingency.
The specificities of families' experiences are highlighted in the thematic
findings below, which correspond with different forms of “failure.” It
should be noted that many of the participants’ experiences fell within
more than one of these categories, even if all of the families do not
appear in all of the thematic sections. In order to clearly and most ef-
ficiently illustrate the themes, select stories from certain participants
are told. All participants have been given pseudonyms.
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Social Science & Medicine 228 (2019) 117–125
5. Findings
5.1. The denial of failure: the ideology of the infallible CI and the
expectation of persistence
The first theme apparent in the interviews was the overwhelming
messaging from clinics of persistence; families were expected to stick
with an AT approach, even when they could see no results in their
child's ability to communicate with spoken language and there were
mitigating medical factors. This theme illustrates an ideology of in-
fallibility regarding the CI and the power that professionals have in
setting the expectations of persistence for families. It also shows how
soft failure may go undetected and unmitigated in such a context. One
white family, whose income was the highest of all the families who
participated, described their experience with their daughter, diagnosed
as deaf at age one and implanted at age two. She received her second
implant at age four. Both parents, Judy and Paul, were present for the
interview. For approximately two years, their daughter was not
speaking and they could not tell what, if anything, she was hearing.
Their daughter has bilateral implants and both had to be explanted and
re-implanted due to hard device failure. Paul explained the consistent
message from the clinic:
Nothing happens quickly. As long as it’s showing progress … they
said until her brain has wired itself enough to where she can really
do well with speech, with auditory, we don't know how well it is
working. Until she can tell us how well it's working, what she can
hear and can't hear.
They describe the intensive speech therapy and AT following im-
plantation and re-implantation as “the hard part.” And here they reveal
one of the messages they were given by professionals that seemed to
make it harder. Paul recounts the following:
[They said] don't learn sign language because we want the children
to start depending on their ears. She had no communication at all. It
was a hellish first couple of years … how do you communicate?
Because she can't understand when you're speaking to her. You don't
know sign language, so it was mostly gesture and she was extremely
frustrated.
Despite these communication problems and the stress of re-
implantation, throughout this time period, they were told by profes-
sionals to stick with it, that “it'll work out in the end.” That is, exposure
to sign language was equated with causing a child to fail to attain
spoken language with the CI – in this instance instead of sign being
emblematic of failure with the CI, it was seen as causal to failure with
the CI. But months passed and frustration from lack of communication
and was mounting. After more than a year with the new implants and
no demonstrable progress with spoken language, they allowed their
child to learn sign language and saw this as communicative success.
When looking back on the two years they had spent without spoken
language communication developing, they acquiesced that speech was
no longer the possible, successful outcome they had hoped. Instead,
communication – in whatever way possible – became of paramount
importance to them and – whatever form it took – was redefined as
success. “We had to. We had to talk to our child somehow. We had to
get through to her in some way.” That is, this was what they deemed the
most important form of care. Knowing that sign language was seen as a
cause of failure with the CI, they told the clinic that “We're just learning
basic words to just help and then we didn't say anything until she was
going to [TDS].” At age five, they enrolled their daughter in TDS. Judy
chimed in at the end of the interview, “The implant is a great thing, but
don't look at it as a miracle cure.”
For another family, who had emigrated from Saudia Arabia, “stick
with it” was also the guiding principle of their journey, indicating that
this messaging is not limited to the US. Ayesha is a middle class, stay at
home mother and her daughter was diagnosed at the age of four months
L. Mauldin
and implanted at age three. She also has an additional, unspecified
developmental delay, though the effects of this on her ability to use the
CI are not well understood. Doctors in Saudi Arabia went through a
variety of treatments (tubes in the ears, hearing aids) and then around
age two and half, the doctor informed her that her daughter was a
candidate for a CI. He did not talk about the effect of her disability, but
rather told Ayesha, “She is going to be fitted with a cochlear implant.
You take her to [oral deaf school] and she will speak in no time.” She
enrolled her daughter in the AT focused school, and began extensive
therapies. Ayesha explains, “I felt that I finally got something … She
was three years [old], I didn't know what to do, and now here's
somebody who's telling you that this thing will solve all your problems,
but it was the beginning of the problems.” For the next five years she
and her husband took her daughter back and forth to the clinic, which
was more than 4 h away, for speech therapy. Each week they would fly
back and forth from their home city. “We take the plane, we go to this
clinic for speech therapy [for three days] we fly back to our town.” The
messaging from the clinic was to stick with AT, but it was hard and
time-consuming. “I was working full time … When I come [home], I
come very exhausted, but I spend like 2 h on my daughter.” The doctor
had explained that, “you must do exercises at home, it's not just two
sessions a week, you must do something.’ I was thinking when do I do
that, how do I do that?…I come [home], I cook dinner and they must
sleep by eight. There is only 3 h for me to see them and I can't quit
because this is the company that pays for her speech therapy.” This
process continues for five years.
Up until this time, Ayesha and her family were on board with
working towards the clinic's notion of success with the CI – the at-
tainment of spoken language for her daughter. But after five years of
continued work, a speech therapist in Saudi Arabia finally suggested
that the CI may not work for her child, perhaps due to her disability.
Ayesha decided to make a radical change and move to the US. She told
me her thinking at the time: “I'm accepting her as she is, but that doesn't
mean that I don't help her. She needs help and I am going to find it.
Even if it's on another planet.” Ayesha said that daughter not having
language was now a safety issue and it caused her to re-evaluate the
meaning of success with the CI for her daughter: “People know that she
doesn't speak and she doesn't communicate, and they are going to take
advantage of that.” Thus, the family decided to move to the Northeast
and enroll their daughter at TDS so that she could have access to
communication through sign language. And this became their new
definition of success. Now, her daughter uses ASL to communicate and
Ayesha recounts the first time she saw her daughter communicate with
her father. “The first time she signed to her father, he was lying on the
chair … and she tapped him and she told him “orange” [she wanted to
eat an orange] … I am so happy she is learning, that we are commu-
nicating. Everything she does for us is the same thing as when a child
speaks for the first time, it's the same excitement.”
5.2. Social and emotional health and narrow clinical parameters of success
and failure
Recall that in the literature review above, clinics tend to measure
success and failure of the CI in narrow parameters that have to do with
speech production and comprehension. In this theme, families talk
about the adverse effects that these narrow notions of success and
failure had on their deaf child. Isobel, a middle class ($55,000/year
income), Latina mother whose family speaks Spanish at home, de-
scribed her AT journey with her deaf son. He was diagnosed at the age
of three months and implanted at age three. After implantation, she was
told that it was not good for her son to be in signing environment, so
she enrolled her son in AT program and then he entered public school at
age five. During this period, she was a stay at home mother and doing
all of the things the CI professionals were telling her to do. For example,
she participated in “all the parent meetings and family weekends and
stuff … to make sure [her children] were okay, that they have
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Social Science & Medicine 228 (2019) 117–125
everything they need … trying to find the best [AT] services for them.”
She also joined a local organization for “parents with children with
special needs … they have professional people that teach you what to
do … how to ask for what you want for your child … to fight for your
rights.” She suspected that school administrators would think “Oh, she
doesn't know what she's talking about” or “She doesn't have any idea
…” I'm not that kind of person,” she tells me, “I know who to reach and
why.” She felt that the institutions she had to navigate made assump-
tions about her level of involvement and she felt she had to prove it.
None of the white parents discussed feeling similarly judged by pro-
fessionals, but similar sentiments were expressed by all of the non-white
parents. Her son was following AT protocols meant to result in spoken
language acquisition, but she did not restrict him from signing. In her
household, multiple languages are the norm and she expressed pride
that the family speaks Spanish, English, and also knew some ASL. In
other words, being multilingual was considered success in their family.
However, she maintained that using the CI and working on AT was her
top priority. As such, her son remained in a public school setting re-
ceiving speech therapy services until the age of sixteen. In this context,
Isobel said, her son and children like him would “hear more … [and]
need to push themselves a little bit more in hearing and speaking.” For
ten years, she reports that he did well in school and with his speech
production and comprehension.
At age sixteen, however, she transferred her son out of public school
and into TDS because success her son's needs became about more than
just producing speech. He had become withdrawn and depressed and
was trying to hurt himself. Isobel called emergency meetings at the
school. Her son said he felt extremely isolated, unsupported in the
classroom, and not connected to the other hearing students. “He came
to me and said, “Mommy, I feel lonely, I feel I don't belong to that
school. I don't want to go to that school anymore.” Despite her self-
reported involvement and adherence to AT and constant advocacy, her
son's speech skills were not enough. He still felt “different” and wanted
to be around others like him. As such, for the sake of belonging, emo-
tional health, and connection with other deaf children like himself, she
began to redefine success from a more holistic perspective. Isobel en-
rolled him in TDS after a long battle with the local school district to get
them to allow her to do so. After this, “he was so happy and signing, I
said, this is my son. He came back. That's my son, the one I want to see.
Not the one that want to lock himself [away] … he was totally de-
pressed.” Thus, emotional health and social connection, that is, more
holistic issues than just acquiring speech, became the main factors in
her decision on what success meant for her son with his CI.
Amy, a white mother from the lowest income bracket similarly
talked about the importance of social connection. Her son was diag-
nosed at nine months of age and implanted at age two. During those
first two years, she enrolled him in AT-focused services, attended a
variety of talks/workshops, and steeped herself in the protocol and
philosophy around CIs. She traveled to neighboring states to attend
“presentations on teaching kids with CIs … to train them for listening,
to train them for speech.” She immersed herself in “hearing impair-
ment, and audiology and neurology and all that, it's an education, you
just live it … Sometimes it was a struggle to get information, but I'm not
one to sit back and just wait for it to come to me, I go digging for it.” He
was enrolled in an AT focused programs from pre-school and in sixth
grade entered a residential oral school, meaning one that served deaf
children with a focus on AT only. Despite all of her efforts, “It wasn't the
miracle we were thinking.”
Amy explained that while her efforts may be clinically seen as
success (i.e., he is able to communicate in spoken language), there are
some missing pieces in terms of him having context and incidental
knowledge. These missing pieces are what she calls the “social stuff.”
She explains:
Sometimes you'll notice [the gap] if you're speaking to him and say
something that he's not familiar with because he doesn't learn
L. Mauldin Social Science & Medicine 228 (2019) 117–125

incidentally. He has to get everything given to him … Sometimes 5.3. Racism: structural “failure” and minority families
when you're talking to him, he'll do one of these [cocks head]. You
have to think about what you just said and re-word it. Some people Sofia, a Latina mother, discussed her deaf child who was diagnosed
don't get it, they'll keep repeating, repeating, repeating and they go, at the age of four, implanted at age six, and who also has an additional
“What's the problem with you?” and then he'll go, “I don't get what developmental disability. They speak Spanish at home and are from
you're talking about.” Puerto Rico (PR). Her child was born there, misdiagnosed as autistic,
and no one knew she was deaf until age four. Up until then, her level of
This is where the misalignment with the outcome of the CI and her
language exposure is simply unknown. Furthermore, the CI was not
expectations occurs. “You're hearing all this [messaging from the clinic]
offered or part of healthcare services in PR, so when she was finally
and going, ‘Oh great, [the CI] fixes him.’” However, while it technically
diagnosed, no one spoke to her mother about the CI or speech therapy.
gave him access to speech sounds, it did not provide him language,
She began to do her own research, found out about how CIs were of-
context, and social connection. The solution for their family was to
fered in mainland US, and moved. “I went to New York on August 24th,
enroll him at TDS for his high school years so he has access to other
2009. That's the day I made a decision. I left everything behind me. I
children like himself and to background information through sign
went with luggage, my two daughters at that time, and I went to a
language. “He's done very well … He fits right in.” He is a very involved
shelter with her, for her.”
student and the center of social life at TDS. Amy describes how she had
Once in New York, she used her cell phone to search for services,
to redefine success, emphasizing that he quickly picked up ASL and
found a local deaf school, and the best CI clinic to take her to. She
joined every activity in the school. This kind of social connection, sense
enrolled her daughter at an AT-focused school and began the process of
of identity, and language access was what she wanted for him.
asking for a CI from the clinic. She explains how she ran into dis-
Sandra, a white mother in the highest income bracket, discussed her
crimination, judgment, and assumptions that she was coming from PR
high school-aged son, who was diagnosed at twenty-three months old
only to “use up” State resources and then return home with her child.
and received a CI at age four. She explained that immediately upon
First, Sofia says, clinic staff “were always judging me” about using
diagnosis they were told about CIs. They decided to work towards
gestures. Up until this time, her and her daughter communicated using
getting him implanted as soon as possible, “We got him right into an
made up gestures between the two of them, since she was diagnosed
auditory-oral program at [age] three.” But it was a lot of work, she
late and had not received deaf-related services in PR. Then, “they didn't
discussed having to take him into the clinic regularly, make sure the CI
give me [any] services at all. [They were] denying that [child] receive
was set appropriately for consistent and efficient amplification, and do
the CI because they were thinking that I just moved to New York to get
all the AT labor involved. As per clinic suggestions, they only used
the CI and I'm going to go back to PR …. [They] discriminated against
speech at home and never learned sign and this remains true today. He
[child], so I had to stand in a big meeting and say … She has the right to
was in an AT focused program in his local school district until kinder-
have the CI.” After this, they told her that they would not give her a CI
garten. Like others above, Sandra was told to stick with it. The clinic
“because it was too late.” Although as reviewed in the literature above,
reinforced the need for more AT. Regarding speech development, and
there is clinical evidence that late implantation is associated with poor
similar to the families in the previous section, the message was, “Wait.
outcomes and clinicians may have been making decisions based on such
It will happen.” Thus, they decided to go all in with these efforts and
clinical information, Sofia felt that this was also discrimination and
moved across the country to enroll him in an oral school that was AT
experienced these interactions as hostile. “I have to fight, fight, and
focused at all times.
then the doctor at some point … says I'm going to do it … But first there
Sandra reports that he did learn to use speech and could commu-
was a big meeting where they made me cry, they made me feel mis-
nicate using spoken language. However, she tells me that the main issue
erable.” But this was not the end of the struggle.
during his time at the oral school was that he was quiet and did not
Once Sofia got the CI for her daughter, the clinic did not want to
engage much. The oral school told Sandra he must have cognitive
provide follow up services like speech therapy. “But I see kids walking
problems and put him in their special education classroom. She decided
inside [the clinic] receiving therapy.” Furthermore, Sofia only spoke
to investigate by exploring other options – once again for her, speech
Spanish and very limited English and she told me that the clinic did not
production and comprehension became too narrow of an outcome to
provide a Spanish translator for her. “So sometimes I have to tried to
focus on. And she found after talking to TDS that they had a different
speak English and cried, and screamed.” During all of this, the clinic
explanation. They said it was about access to language, a sense of self,
staff kept saying, “You'll go back to Puerto Rico” indicating that they
and community. Here Sandra goes into more detail:
believed she was only in New York to “use up” resources. To which she
[TDS] didn't think it was because of [a cognitive issue] … They kept would reply, “Why do I have to go back to Puerto Rico?…I have my
calling it background information … all of a sudden we were on a whole life here already.” But they remained firm, saying “You'll go back
family vacation [after enrolling in TDS] and we were playing that to Puerto Rico. That's what everybody does. Get the services here and
game Apples to Apples and he was coming up with the best answers go back to Puerto Rico.” She insisted that this was the reason they did
… I think now with the sign, he's getting it out, with TDS he's getting not want to help her daughter and refused to provide follow up services.
it out. He's even talking [using speech] more. It's weird because I But she knew that the CI must be turned on, adjusted, and that you had
was telling them at our last meeting, not only do I feel that's he's to have follow up therapy, telling me she knew that because of her
more engaged it's just he seems he's more present. research on the matter. She tells me she made her child wear the CI
every day, but without adequate support, (and certainly her daughter's
At the time of Sandra's interview, he was fifteen years old and
developmental disability could have impacted the outcome), speech did
“picking up the sign language very quickly at school,” but he still only
not develop.
uses speech at home. She notes that they even think he talks more at
Jose is a college educated, middle-class ($48,000/yr) Latino im-
home now and surmises it may be a result of greater self-confidence as a
migrant father. His son, who was born in the Dominican Republic (DR),
result of being more socially integrated. He is far less quiet and is far
was diagnosed as deaf at thirteen months, although not implanted until
more involved, such as playing sports. When discussing how he is now
age eight. Like in PR, when he was diagnosed in the DR, he was given
and what she had expected with the CI and all the AT efforts, she says,
hearing aids, but a CI was never offered or mentioned. His father
“I've had to reassess because I thought it was going to be the magic
quickly became concerned and did research about the CI and the ser-
bullet … and that he'd be in a regular school now.”
vices available in the US. Within six months he moved his son to New
York and began going to an audiology clinic with him. At this time, his
son was nineteen months old. But like Sofia, he too was not offered the

122
L. Mauldin
CI. Instead, he says he finally “brought it up … because I knew hearing
aids weren't just not working on him.” He explained that he was the one
who did the research and suggested it, to which the clinic staff re-
sponded, “We have to check if he is a candidate.” He was. “It just
seemed like I was asking about everything; they didn't seem like they
were suggesting much.” The same thing happened when it came to
getting EI or other disability-related services: He was never told about
the availability of these services; the clinic never mentioned it. Without
knowing this information, he had to pay a private tutor to come to his
house and work with his son rather than use the free services provided
by all states for children with disabilities. He also hired an ASL tutor for
both he and his son to acquire a language they could share. Years later,
his son received a CI, but then the clinic tells him that signing is not
allowed anymore. “I'm being told not to sign,” but it was a struggle to
get his son to wear the CI. Part of AT is encouraging the child to wear
the CI at all times, but it took about two months for him to “get him to
actually, keep it on up for more than an hour.” This struggle continued
for some time, but he persisted in encouraging him, developing stra-
tegies, and taking him to speech therapy three times a week. For Jose,
getting the CI was the end of a years-long journey of trying to access
services. In such a context, the literature suggests that AT will not be
successful. And today, his son is enrolled at TDS and primarily uses sign
language to communicate.
6. Discussion
This research asked: For families who have a child for whom the CI
did not “work,” what does the process of “failure” look like? The
findings above demonstrate that across this racially/ethnically and so-
cioeconomically diverse set of families, the processes of failure took
three main forms represented in each thematic finding: The denial of
failure through an ideology of CI infallibility, the mismatch of family
experiences with narrow clinical notions of success and failure, and
structural failures found in the unequal availability of CIs, as well as
clinical bias and racism. Each of these themes shows how success and
failure operate as contingent categories, within clinical notions being
narrow, dependent upon a belief that the CI will work, and focused on
speech production and comprehension. In contrast, families acquiesced
that the CI does not always work and found ways to mitigate failure by
redefining success through the child's adoption of ASL and entrée into a
deaf community. Families also had much more comprehensive notions
of success when it came to their child's whole being; they emphasized
emotional health, social connection and identity, and easy language
access.
In the first thematic section regarding the ideology of the infall-
ibility of the CI, parents noticed early on, despite their self-reported
adherence to AT protocols and involvement in their child's follow up
care, that spoken language development was not occurring. But clin-
icians continued to expect persistence from these families, telling them
to “stick with it” and that it would eventually work. This occurred for
families across income brackets. These expectations had considerable
power over these families for sometimes years at a time. Meanwhile,
soft failure was occurring and parents had to eventually reconsider the
expectation of persistence and the recommendation that using ASL
would contribute to their child's failure with the CI. These parents re-
defined success to an outcome that depended on sign language for
communication.
As is shown above, this infallibility frame adopted by professionals
means they adamantly believe the CI works, which it appears in the
persistent messaging to “stick with it” and to avoid sign language, even
for extended periods of time. It is a belief that the CI will work, but it is
crucial to point out that it is also simultaneously dependent upon and
motivated by an intense devaluation of ASL on the part of professionals.
Such an infallibility frame, dependent upon a medical model view of
disability and devaluation of Deaf culture, appears consistently in these
narratives. Although this is only one small sample, it prompts future
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Social Science & Medicine 228 (2019) 117–125
questions about how deeply and consistently such beliefs and actions
shape services, healthcare delivery, and the advice given to parents.
These may be important areas for future research, as these narratives
show the potentially dire developmental and emotional consequences
of such a frame for deaf children who receive the CI and their families.
In the second theme, parents discussed the narrow clinical success
with acquiring spoken language communication and how their children
performed well using speech. However, they identified important needs
beyond the narrow scope of clinical measures of speech. Key to this is
that these families measured success much more holistically; they
wanted their child to have a sense of self, belonging, community,
identity, and access to language first and foremost, whatever form it
took. As the narratives show, these families developed much more
flexible versions of success. In a more open and expansive version of
success, they considered ASL an important tool, not just for commu-
nication but for identity, community, and socialization. This came up in
all the different kinds of “failure” presented in the narratives. Although
this result is partly expected because the sample was recruited from a
deaf school, it is striking that families arrived at using ASL and re-
defining it as success with the implant from a variety of starting points
and types of failure. Yet in clinical literature and culture, there is an
association between failure and sign, as sign is seen as both a cause of
failure – as a contaminant in the AT process – as well as the result of
failure (Mauldin, 2016).
The third theme highlighted the broader social context in which
implantation happens by showing what processes failed, when, and
whom they failed. Key in this theme was that unlike for the white fa-
milies in this study, the families of color all discussed a lack of access to
resources and clinical experiences with racism. The minority parents in
the sample were highly involved in their child's care, but their stories
reveal structural and clinical failures. Their stories revealed how they
also dealt with additional barriers and obstacles, including difficult
stories of immigration, discrimination in clinical settings and structural
barriers to care rooted in historical institutional racism (e.g., the lack of
CI-related services in PR and DR). These stories suggest some dynamic
ways in which systemic, institutional racism in the form of lack of
services affect minority families disproportionately. For example,
Sofia's story points out serious areas for future research, such as how
clinical bias and attitudinal barriers impact families of color, as well as
better understanding of the structural inequalities that result in some
deaf children being identified and implanted in a timely manner.
Parents described being denied services, being directly told they were
draining the system – a particular accusation that has its roots in eu-
genic thought – and being victims of omission by simply not being told
about available services. It would be useful to follow up on these issues
with a larger sample of parents of deaf children.
The data presented here may contribute to the literature in medical
sociology, particularly with regard to bias in clinical settings. The fa-
mily stories above suggest that in contrast to prior research where
audiologists applied a deficit model to parents (Kirkham et al., 2009)
and assumed a lack of involvement, these parents were involved and yet
the CI still did not work. Although this is a small qualitative study, it is
useful to note that the families telling stories of failure in this sample
came from across all income brackets, from below $25,000/year to
above $150,000/year. That is, no matter their income level, “failure”
appeared. However, only particular types of ‘failure’ – such as cultural
and structural inequities – affected minority families and not white
families. Minority parents' stories suggest they experienced structural
racism and clinical attitudes that may render “failure” more likely to
occur in their children. Future research would do well to corroborate
patterns in a larger sample and identify whether or not such structural
failures are recognized in audiological practice or if the deficit model
(which individualizes the ‘problem’ to individual families) is still de-
pended on to explain unequal outcomes in implantation. What remains
is that these eleven stories of ‘soft’ failure, structural failure, and the
unexplainable failure where the device functions and the parents do
L. Mauldin
everything “right” yet it still does not “work” suggest that current
clinical attitudes that subscribe to a deficit model explanation of poor
outcomes (e.g. Kirkham et al., 2009) are insufficient. In particular the
stories of the minority families in this sample seem to reflect recent
scholarship that posits racism as a cause of health inequities (e.g.
Anderson, 2013; Perry et al., 2013; Williams and Mohammed, 2009).
Research has also shown that providers have the same level of bias as
the general population and their bias has been shown to affect health
outcomes (e.g. FitzGerald and Hurst, 2017). It may be that we also need
to extend our discussion of bias to ideological beliefs about the in-
feriority of signed languages.
This article showed how narrow, clinical outcomes (broadly con-
strued as “success” and “failure”) give way to messier, unwieldy, and
uncertain trajectories with the device, as it is embedded within a vo-
latile sociotechnical system. Often clinical literature and culture focuses
on hard or technological failure, but focus on the functioning of the
device alone without seeing it in context means “suppressed are the
hard cases, ambiguous outcomes, and elongated time frames”
(Lipartito, 2003, p. 55). And these are the very things that and STS
approach combined with family narratives reveal. Such stories help us
make sense of the role of the sociotechnical system in potentially re-
configuring what success or failure even is, what has failed, when and
for whom it failed. As Lehoux et al. (2004) emphasize in their study of
integrating medical technologies at home, studies like this are war-
ranted as “negative experiences of users are ignored or downplayed by
manufacturers and health care providers alike” (Lehoux et al., 2004, p.
639). Thus, these stories suggest areas we may need to focus on in fu-
ture research about what gets counted as evidence and labeled success
or failure when assessing CI outcomes in the first place.
Finally, this research contributes to the literature in disability stu-
dies. In the stories above, disability intersects with other social cate-
gories regarding race and class. Professional power is wielded. Families
wrestle with the contingent meanings of their child's deafness, even as
they engage in medical interventions to “fix” the impairment. What
emerges in the exploration of meaning between clinic and home is how
clinical messaging is centered on both the undesirability of disability
and an infallibility logic about technology. In other words, bringing STS
and disability studies together shows the dependence of narratives of a
technological fix on the undesirability of disability, the uncertain tra-
jectories of technologies meant to intervene, and the potential for in-
dividuals and families to find success in contexts where disability, and
in this case Deaf culture, are not devalued but instead valuable and
central to the overall health of their children. All of this suggests the
rich area of future inquiry at the nexus of medical sociology, STS, and
critical disability studies has to offer moving forward.
Acknowledgments
This research was funded by various entities at the University of
California, San Francisco Fund, the Program in Women’s, Gender and
Sexuality Studies, the Center for Applied Research in Human
Development, and the Research Excellent Program. I would also like to
thank Carmen Britton for her assistance in coding data. And the fol-
lowing people helped me conceptualize the work and/or gave sub-
stantive feedback on previous drafts of the paper: Shani Evans, Rachel
Fish, Angela Frederick, Mara Mills, Jenny Pearson, Dara Schifrer, and
Carrie Shandra. The author is also grateful for the feedback of a col-
league who wishes to remain anonymous.
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