The following is a study I started in graduate school. It is biased and the methods need a lot of work but I wanted to put it out there for other people to use as a stepping stone for similar research.
Thank you for not chewing: Perceptions
regarding accommodation for hearing
impairment in graduate school
Lisa Rossignol, M.A.
Graduate Student, University of New
Mexico
Abstract
This autoethnographic study seeks to
elucidate the perceptions of graduate students about the validity of a rare
hearing impairment--Hyperacusis with Selective Sound Sensitivity Syndrome
(4S)--their role in accommodating the needs of a classmate with a hearing
impairment, and their perception of the way the classmate asks for their
participation in her accommodation. The researcher employs interview methods with
classmates in three departments at the University of New Mexico, with whom she
has taken classes, and reflexive narrative of past encounters.
Keywords:
disability, performance, autoethnography, graduate school
Introduction
Setting: It
is the first day of class for Introduction to Qualitative Methods. I have opted
to take this course in a department different from my program of study because
of its availability in the Spring semester. I am nervous because the instructor
for this class was replaced the week before the semester began and I have been
unable to contact him regarding my need for his assistance in establishing his
role in facilitating my accommodation. The instructor has each student
introduce him or herself. I can see people chewing gum and eating and, as we go
around the room my anxiety grows. This is my fifth semester in graduate school
and I can never gauge what the response to my accommodation will be. I am the
last person to speak.
Me: My
name is Lisa Rossignol and I am in my last semester of a Master’s in Health
Communication. I have a rare, neurologically based hearing impairment that
makes it hard for me to filter sounds so I wear these headphones so I can
control the sounds in the room and I wear special hearing aids. I also receive
an accommodation that requires anyone in class with me to not eat or chew gum
while we are in class together or else I can’t be in class. I know this is
strange but I appreciate you assistance with this and am happy to answer any
questions you have or would gladly supply you with gum at the end of each
class.
I have a hearing impairment called
Hyperacusis with Selective Sound Sensitivity Syndrome (4S), which means that I
hear soft sounds like people chewing, slurping, chomping, or smacking with
their mouths and it causes me the experience of physical pain. I have had this
condition since I was nine years old but have been receiving accommodations and
treatment for the condition for the past five years. I wear sound suppressing
hearing aids, when I am in class use an FM system that amplifies the professor’s
voice and allows me to drown out all of the other noise in the classroom, and
my classmates are asked not to eat or chew gum during class.
The Problem is Me
Setting: The
final semester of my Master’s program, I took a qualitative research methods
course in a different department. Eight weeks into the 16-week semester we were
asked to share our research questions for our final project with the entire
class. I have been hesitant to participate in any type of group work because
the third week of class I was told that all of my classmates didn’t want to
work with me because they thought it was unreasonable that they can’t chew gum
or eat in class. In perhaps a passive-aggressive gesture, the research questions
I shared regarded the perceptions of my classmates about my hearing impairment
and if there is an ideal way to communicate my needs to classmates for
accommodation. The following is my recollection of the conversation.
Classmate: Can I be straight with you? Because you seem like you like
honesty. The reason we were all resistant
to you asking us not to eat in class was you sounded really rude.
Me: Why was it rude? (I could feel my face filling with blood and turning bright red)
Classmate: It was your tone. I know you more now and
know you are cool but it was your tone. It was rude and kind of offensive.
I
proceeded to question this classmate about what made her think I was rude.
Could it have been that I am a woman? No. Because I am from a different
department and no one in this class is familiar with me? No. Because I am a
woman clearly articulating my needs? No. Because when I say I have a
neurologically based hearing impairment people don’t know if it means I am
cognitively impaired or profoundly hearing impaired? No.
Classmate: My husband is a counselor so I always try
to think about how I am responsible so maybe you need to take responsibility
for the way you asked.
It would be one thing if the
reaction of this classmate and this group of students
was
different from the previous four semesters of graduate school. Each semester I
have had at least one class that contains students resistant to my need for
them to follow the already established rule to not eat or chew gum in class. Is
the resistance about a rare, little-understood hearing impairment? I don’t eat
in class or chew gum either so I don’t understand the resistance. Is it because
I don’t look like I have a disability? Is it because what I am asking for is a
huge imposition on others? This paper will seek to address these questions.
Literature
Review
After consulting the literature, I
found that there was very little regarding the perception of disability and only
one article regarding the perception of a hearing impairment. The following
section will offer a description of related research to form the foundation of
this study.
Scott (2013) provided a poignant
glimpse into her experience as an academic, professional woman with cerebral
palsy in a form that allows her to move fluidly in and out of “disability
identity.” Her condition is so mild that most people experience her as a person
recovering from a temporary sports injury instead of as a person who suffered
brain damage, likely to a lack of oxygen, near birth, which resulted in spastic
cerebral palsy. Through reflexive narrative techniques and supported by
theoretically by performance studies, Scott weaves together interviews with
three individuals who have varying forms of cerebral palsy with her own
experiences with cerebral palsy.
Kumar et al
(2012) explored the perception of hearing impairment in the general population
by surveying passengers at a train station in England. Through a random sample,
researchers were able to survey 151 passengers with four open ended questions:
1) Have you ever seen a hard of hearing person?
2) What do you think can be the
cause for hearing impairment? 3) What do you think can be done to manage
(treat) a person with hearing impairment?
4) Have you heard about an
audiologist and speech pathologist?
Researchers
found that the majority of participants new a person with a hearing impairment
and accurately understood that hearing impairment can be cause by a biological
or environmental influence. However, the
majority of study respondents believed that all hearing impairment could be
treated with medication or surgery. Finally, most participants of this study
had never been to an audiologist even though some of them clearly had hearing
impairments. Misunderstanding about the treatment of hearing impairment and the
long-term consequences of hearing impairment is prevalent in this general
population.
Following
this literature review, the lack of information about interpretations of
hearing impairments in an academic setting, I will seek to elucidate the
following questions:
RQ1: What is the perception of classmates in
my graduate program about my hearing impairment.
RQ2: How do my
classmates feel about being asked to participate in my accommodation?
Methods
For this study I will employed autoethnographic
methods and an in-depth interview a
classmate from the Department of Communication and Journalism at the University
of New Mexico. My classmates identity will be kept confidential with the label
of CRG which is a code I have produced and only has meaning to me. CRG is a
twenty four year old male from Mexico and has participated in several classes
with me as a member of the same graduate cohort. He will be able to speak to
his understanding of our classmates as well as his own understanding because he
had greater inclusion in social experiences with others from our department.
In the future iteration of this
paper, I will seek participants that fall into three categories 1) classmates I
like and feel comfortable talking to; 2) classmates I am indifferent to or
unsure of their feelings about my disability; 3) classmates I do not like and
feel uncomfortable talking to. Ideally, I would like to have one person from
each category, from every graduate class I take for an academic year. I will also seek to choose candidates that
are different from my own demographics, which are that I am a middle class,
Hispanic woman, who is married and has children. I am a person who has had a
disability for many years but has only begun my indoctrination into disability
culture and the performance of “disabled” for five years.
My
grand tour question was: “Tell me, in
as much detail as possible, about the first time you were introduced to my
disability.”
Data
Analysis
I interviewed CRG on April 4, 2013 at the
University of New Mexico Fine Arts and Architecture Library in one of the small
study rooms. The location was quiet, comfortable, and convenient for both of
us. I recording the interview using a digital recorder and gained consent
through verbal response. In the event that I acquire IRB approval study I will
either be required to file a waiver of signed consent with my application or I
will need to utilize the IRB provided letter of consent and gain a
signature.
I asked my grand tour question and
then used CRG’s responses and moved through the interview in an organic and
fluid mode. The interview lasted for just under thirty minutes with only a few
seconds recording as inaudible. Three days later, I transcribed the interview
into a word document on a password-protected computer. Finally, a week after
the interview I began to analyze the contents of the interview. First I read
through the entire interview two times, resisting the temptation to make notes
or to start analyzing the data. Once I became familiar with the data I observed
the emergence of three themes that threaded through our friendly conversation
which I will detail in the next section.
Results
Need for Repetition if
Explanation
The
first thing that became clear from this interview was the CRG’s understanding
of my disability is absolutely accurate but came as a process of piecemeal conversations
that occurred over the course of our two years together in graduate school.
Me: And about how long do you think and how many
conversations we had before you had a grasp?
CRG: How many conversations? Well the one we
didn’t talk about really-we have talked once or twice. You know you never sat
down and said “look CRG this is what I have” so it was more like in between
conversations so I think it was a looooong process. Like from the first time
how should I act which is also important for me but also how do you feel what
do you think about it but also interested in the possibilities as a kind of a
aesthetic experience prospective. It was a long….countless talks in which I put
all this information together that makes kind of sense to me but it was not a
[short process].
I found this point
in the discussion to be interesting and the previous
explanation he offered for the
first time that he heard about my disability because I had explained my hearing
impairment two times prior. This revelation between us further underscored the
challenge that my rare condition poses to gaining understanding and cooperation
from others.
Me: What would you say if I told you that I did
introduce it when we were
at
Dr. [blank]’s house when we first met?
CRG: Really?
Me: And I did talk about it in Dr. [blank] class
when I explained it because I had to leave to go do those MAD’s or what were
they called? The RAD’s?
CRG: Oh yeaaaah. So yeah, I completely forgot! I
now remember from that class-first class but I can’t remember in Dr.’s house.
This indicates to me that it may be
very difficult, if not impossible, to create an introduction that would be
effective in gaining the cooperation and understanding of all or most of my
classmates. I may have to just accept and submit to the fact that understanding
and acceptance about my disability is an educational process and I will hae to
find the strength to be patient with others. The burden of compassion and grace
lies with me.
Perception of Disability
CRG has a clear understanding of my
disability and could describe it to me in correct terms. However, he did
indicate that he felt apprehension about talking to me because he did not
understand what my issue was and was most concerned with going something wrong.
CRG: I feel really concerned of not acting
wrongly or doing something that is inappropriate so given my not understanding
of the thing, I was afraid of not-I mean not rejecting you as of working with
you-but I was afraid of doing something wrong but I think that definitely happened
at that moment like…How would you frame that? Ummmm. I would work with someone
based on that but I would be really careful or self conscious of not doing
anything stupid (laugh) so as a result, I would not foster that kind of
interaction. But on the other hand I did try to to research on my own.
When asked if he believed that I was
intentionally segregated by my classmates because of similar discomfort with my
hearing impairment he indicted that he believed it was a large factor. At first
he talked about thinking that it had to do with other factors and then, as he
talked through the conversations that he participated in about me, he finally
concluded that I would likely have been treated very differently if I hadn’t
been identified the way I was -- different and odd.
CRG: Mmmmm. I figure it’s a really important
factor but I don’t think it’s the only one. Personally. Uh, or at least not
consciously you know? Because from the from the people that had discriminated
you or segregated you I heard many of the reasons you know so at least not
consciously or not express that is their reason. But I think it is a huge
factor. I think if you didn’t have that at the beginning-not at the
beginning-if you didn’t have that as first dimension that we know about you
definitely would be different. But the way they identified you with this label
form the very beginning you know. So I would say, it has a lot of weight.
Suggestions for the Future
CRG
believed that the best way for me to introduce my disability was to be a
seminar that was offered at the beginning of each class that I enroll in. He
felt that it would be best if I remained anonymous and if the instructor was
responsible for educating the class about my accommodation.
CRG: Yeah I think it should be the first day of
class. Not half and hour 20 minutes or 15 minutes but I think it needs to be in
the beginning because people doesn’t necessarily have an expectation of talking
about something specifically that first session unlike if you do it in the
middle of the semester where you have to discuss something important or
presentations or having papers.
CRG was adamant that the information must
come from the professor and
be
policed by instructor. I would agree except that this approach has lead to
other intense, awkward situations where my classmates were speculating about
what
type
of person would have this type of condition. I began resorting to breaking my
anonymity
following a few of such encounters.
Discussion
This interview was very painful for me,
despite having asked my closest
friend
in graduate school. In order to be more rigorous, which I will discuss in the
limitations section, I would need to interview more classmates and the research
may benefit from interviews with people I feel the least comfortable with.
However, I don’t know if I could bring myself to do those interviews. This
interview left me so angry that I wanted to file a lawsuit against my
department for segregating me.
I would caution other researchers from
working so close to heartfelt issues
and
I would encourage skeptics to think twice before scoffing at the toll this type
of research can take on individuals.
All that being said, I believe that this
line of work could greatly benefit the
literature
in regards to people with disabilities and particularly for those with my rare,
unseen, often misunderstood disorder. I also believe it can provide insight to
the greater population about the cost of accommodation. For every student that
is respectful and doesn’t eat or chew gum in class, there are two more
classmates that will isolate and avoid me
Limitation
The most obvious limitation of this study
is the fact that, at present, it is
only
a case study. It could stand as a case study but would require much more
analysis of the interview. I don’t believe that any more pertinent information
is contained in the interview so I believe I would need at least two more
interviews with other classmates to strengthen and triangulate my findings.
Finally, I believe my bias was present in
the questions that I asked during
the
interview. This is not to say that my findings are not significant but it may
benefit me to practice much more general or sterile questions.
References
Suman, K., Nachiketa, R.,
Punam, K., & Bhaskar, D. (n.d). The conceptions of hearing impairment,
causes and its management: A train survey. International
Journal Of Pediatric Otorhinolaryngology, 761123-1126. doi:10.1016/j.ijporl.2012.04.014
Scott, J. (2013).
Problematizing a researcher’s performance of “insider status”: An
autoethnography of “designer disabled” identity. Qualitative Inquiry, 19(2), 101-115. doi:10.1177/1077800412462990
Comments
Post a Comment