Living with a Label:
Incorporating Learning Disability into Sense of Self
Natalya Cowilich
December 14, 2013
Living with a Label:
Incorporating Learning Disability into Sense of Self
Introduction
Einstein once said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it
will live its whole life believing that it is stupid.” This, then, might be how one might feel with a
learning disability in a world of bureaucratic education in which a dominant learning paradigm is
enforced onto all. The labeling process, particularly labeling one with a learning disability,
affects one’s sense of self in ways that will be explored throughout this research paper. There are
many different ways to learn, including visual, kinesthetic, and auditory techniques, yet many
spaces in the educational setting do not accommodate for these learning styles. Many people who
do not learn in a traditional, mainstream manner are considered “learning disabled,” and are
assigned a label from a professionally trained psychologist in order to better integrate their
learning style into the norm. The overarching research question, then, is how do people respond
to labels? This qualitative analysis draws from the in-depth experiences of twelve people with
labels of learning disabilities who have willingly shared their experience of living with an
invisible label.
Let me explain and share my personal investment in this research, as it is near and dear to my
heart and although it is for a class, I also hope to move in a direction of social justice and
understanding: my brother was diagnosed with a learning disability when he was just starting
grade school (he's seven years younger than I) and this affected his self-esteem and physical
health. He was put on medication that made him unable to eat and he was unable to sleep. My
brother is amazingly brilliant, testing in the college level for reading comprehension and
mathematical skills, and he is in middle school. But he never turns anything in for one reason or
another and has other, underlying learning abnormalities. I seek to understand the experience of
those with learning disabilities, especially people who have went on to college and are
navigating the learning disability in a society that seems to be molded for a specific style of
learning. I hope to challenge educational paradigms and at least allow the voices of an invisible
disadvantaged people to be heard.
I cannot guarantee anything will come out of my study. This is simply the nature of research--I
must stay true to what I learn about in the interviews. I cannot force correlations or give direction
to my conclusions without first interviewing a large sample and comparing answers. The
interviews I have completed support the ideas that I have outlined in this introduction--I certainly
hope that my research will have a positive effect on students with disabilities. If, by the end of
my Research Methods II class, I cannot draw any solid conclusions, I will at least have the
voices of twelve people recorded and documented to speak up about an invisible identity. By
exploring how people respond to labels, specifically labels of learning disabilities, we might
come to understand how we develop our sense of selves and the role of the powerful majority in
establishing minority roles, and how inequality is reestablished through dominant paradigms
reinforcing the stereotype of the “stupid” person with a learning disability. I am deeply invested
in trying to allow underprivileged people get a chance to explore and share their experience, so
even if nothing comes of this study at all and it sits in a file somewhere as to prove that I will
eventually graduate with a degree in sociology, at least for anywhere between twenty-five
minutes to over an hour, I was able to sit down with people with learning disabilities and simply
listen to them discuss something they most likely never otherwise get the opportunity to discuss
on such an in-depth level with another Ithaca College student.
Methods
In order to obtain data for my study on how people respond to labels, I interviewed 12
individuals who have been labeled with learning disabilities. In order to begin my qualitative
research study, initially I printed flyers and posted them in all of my classes, made an
announcement before each class about my study, handed out my contact information, and created
a Facebook event. I also posted about my Research Methods II project in the Ithaca College
Class of 2015 Facebook page and encouraged students to spread the word about my study. I
limited my sample to students of Ithaca College simply because I do not have time to branch out
past our institution. Initially, I was very discouraged about the project, because people were not
reaching out to me. I thought after three interviews, I would not be able to complete my project.
However, I met with the director of the Office of Student Disability Services who agreed to send
out a flyer detailing my Research Project to the listserv of students with disabilities. This was
allowed because I attached a clause saying that I was in no way affiliated with the office and the
study was independent and completely optional. I could only describe my study and provide my
contact information.
After the listserv email was sent out to all students registered with the office, I began getting a
flood of emails, phone calls, text messages and general interest in the study. I scheduled as many
interviews as possible on no other basis but availability. I opened the first emails or text
messages I received, negotiated dates, times, and spaces, and then went from there, on a firstcome first-serve basis. I had to be particularly generous when making accommodations of space
because it was imperative to me that my subjects would be comfortable revealing such an
integral, often guarded part of themselves. It was difficult to be so accommodating as far as time
and space went, because I had to build these interviews into my schedule very carefully to try
and fit everyone in while still accomplishing my academic and scholarly duties. However,
ultimately, the uneasiness and busy scheduling was worth it. The interviews I’ve collected have
been in depth and are invaluable to me.
Qualitative research seemed appropriate to my question because I ask many questions based on
how people felt during certain situations, asking people to recall emotional experiences and
explore in depth personal situations. I do not believe any other method would have been
appropriate for this study. I went to the people who responded me, asked them if they would read
and sign the consent form, asked if they were comfortable with me recording the interview
(which everyone was), and then proceeded with the interview. I stuck to scripted questions and
deviated from them only for clarification or to explore an in-depth memory, something I didn’t
understand, or something I thought would be valuable to the study which was brought up by the
interviewee. The interviews are audio files on my computer right now and are to be transcribed
into documents and later all audio files will be destroyed and personal identification information
will be removed.
My instrument included twenty-four questions ranging from “have you ever been tested for a
learning disability” to “how did being diagnosed make you feel,” to questions based on family
understanding and having a learning disability in the workplace. Variables in my study included
gender and age. The main sections of my guide included initial questions about how one came to
be diagnosed with a learning disability, what it was like to be diagnosed, how the diagnosis was
accepted and received by others, if there was community understanding and family support, if
the learning disability affected one’s personal and professional life, whether or not the learning
disability affects how one forms relationships with others and finally, an open space at the end of
the interview to voice any other comments, concerns, advice or information. An Appendix is
attached at the end of this document that includes the interview questions in detail.
Sample Characteristics
There were five women, six men, and one gender queer individual. All interviewees volunteered
themselves into the study, which has implications for the results of my research such as people
who are committed to activism or advocacy. This may leave other voices unheard when it comes
to the life of someone with a learning disability. All interviewees were Ithaca College students.
Key characteristics of the sample include the fact that everyone interviewed in my sample is
currently enrolled as an Ithaca College Student. This implies that people here have already
survived the rigors of their first twelve years of education; therefore, the fact that these are all
college-level people is a sort of “screening” in itself, the fact that each individual has made it this
far. It also means that most people, with the exception of two outliers, are between the ages of
18-22.
Section 3: Hypotheses
Ho1: The label of learning disability is initially received with feelings of stigmatization, but
these feelings often decline over time.
Ho2: Despite how people with learning differences have grown to cope with their learning
techniques and are now navigating their selves as Ithaca College students, the idea of being
learning disabled is still linked very closely to the idea of being unintelligent or inadequate.
Ho3: Incorporating one’s learning disability into one’s identity through a process of acceptance
and adjustment takes emotional work that declines over time but never completely diminishes,
and this acceptance leads to strengthened self-realization.
Ho4: There are certain aspects of living with a learning disability, such as medicalization, that
one has to work very hard to hide and often create feelings of ambivalence.
Ho5: People with learning disabilities frequently feel like their disabilities are not taken seriously
in society.
Ho6: The label of learning disability is positively incorporated into one’s identity through a
process of acceptance and adjustment which leads to a sense of relief.
Ho7: Although the process of identity maintenance has many similarities, there is a diversity of
different paths that people with learning disabilities have chosen to navigate their identities and
decide what it means to be learning disabled.
Section 4: Analysis
[Stage 1] Initial Recognition: Learning Difficulties in Childhood
All 12 Ithaca College students who I interviewed described the beginning of their career in
childhood. Every single person I interviewed described their initial learning differences in the
education system. For example, when asked the interview question, “what lead up to testing,”
person A says,
“My teachers couldn’t deal with me. Acting out a lot. You must be disabled. They did a
bunch of tests, they talked to my parents, they sent me to an independent diagnostics
lady.”
Teachers and educational authorities were always the catalysts for each individual’s career
initiation. Person C describes struggling in school in elementary school as well:
Can you tell me more about how you came to be diagnosed with a LD? How did that
happen?
“I was in resource room since I was in 1st grade in elementary school and I couldn’t really
tell you how I got there, my parents probably realized that I was struggling in school, I
was always having trouble comprehending what I was reading. I was pretty on the slow
side in math and other main subjects, so that’s probably why I got placed for that extra
support and um, once I got diagnosed it just further reassured that but um yeah I think I
was just on the slower end of the spectrum so my parents just wanted to make sure I had
all of the means and needs to be successful in school. The resource room was in the
school and my 504 and IEP was all school based but I did have psych testing outside for
the diagnosis.”
Person D begins their journey in a similar way:
How did you become diagnosed?
“I had bad grades in school and then they evaluated me . . .”
Each case is the same in that the initial recognition of the problem was in elementary school,
although evidence arises in multiple forms. Person D had physical evidence in the form of grades
that they were struggling in school, as opposed to person A, who was observed as “acting out a
lot” which affected learning (or maybe we should say affected teaching, or maybe this is
symbiotically indifferent). Person E describes their initial struggles in school in this way:
Can you tell me more about how you came to be diagnosed with a LD?
“Yeah, I was really struggling in school, like I didn’t know how to read until after third
grade and I was always the last one in my classes, and I went to a pretty privileged school
so they kind of saw that I was taken care of, they put me in special classes and they didn’t
call it anything different, they just focused on reading, once I got to Middle School I
started acting out a lot and school got really hard for me so my parents said okay we’re
gonna go see a psychiatrist, they were coming from a mindset like ‘there’s no way my
kid is gonna be stupid’ there has to be some reason.”
Person F was so young when they were diagnosed, they don’t even remember the initial process:
Can you tell me more about how you came to be diagnosed?
“Not really because I’ve had it my whole life, I got diagnosed in preschool. Probably my
teachers were like, that kid is a little crazy! (Hehehe). I went in again for testing later on.”
And so on, and so forth: almost every career of each person I interviewed started out almost
identical, being early recognition in childhood. Even the one exception to the rule of learning
differences being recognized in early childhood, a person whom we will call “person B” who
was diagnosed later on in life when they were reportedly 37 or 38, describes difficulty with
learning beginning in childhood:
This is really interesting because most people that I interview, they received the diagnosis
when they were younger. Did you experience anything when you were a child?
“Yes, I actually, well, I mean I had all the symptoms throughout my life, you know even
as a kid I couldn’t pay attention in class, I couldn’t finish projects, things like that. But I
didn’t make a connection to ADD until this one psychiatrist starting talking to me about
it.”
Throughout the initial recognition process, it is evident that there seems to be a dominant way to
learn and navigate the education system, and these people who were later labeled with learning
disabilities were compared to established expectations, or student norms. These students could
not meet established expectations, whether they were a standard of appropriate behavior or a
bracket of appropriate grades, and this is addressed as a problem and henceforth begins stage 1
of a career of persons with learning disabilities.
[Stage 2] Testing and Diagnosis
After the initial recognition of a problem—something was different about this student, this
student was not acting like the other students, this student was not earning grades comparable to
other students and at a level deemed as successful, this student fell behind other students, etc.—
each interviewee was typically taken to a professional or encouraged to seek professional help
which lead to testing and diagnosis of a learning disability. Because it was a requirement for all
of my subjects to have an official learning disability as a result of a professional diagnosis, I will
not include lengthy quotes in this section, as everyone received testing and a label of some kind.
The range of diagnoses received include Attention Deficit Disorder (ADD), Dyslexia,
Dysgraphia, Asperger’s, Attention Deficit Hyperactive Disorder (ADHD), Auditory Processing
Disorder, Visual Processing Disorder, Short Term Memory, Dyscalculia, and Sensory Integration
Disorder. It might be important to note that it was not uncommon to have a coupled diagnosis,
for example Dyslexia and ADD, ADHD and Dysgraphia, and so forth. It might also be important
to note that while most interviewees received a diagnosis when they were in their elementary
school years, several people also received a diagnosis later on in life or were retested and rediagnosed later on in life.
[Stage 3] After the Diagnosis: Responding to Labels
There are many ways that people respond to labels. The dominant belief in my study was that
people tended to accept their label, found relief and strength in their label, and used their past
struggles as a drive to work harder at academics. Some people reject the label (and perhaps the
notion of labeling in general) while others accept it and find strength or relief in their label. Still
others remain indifferent, insisting that nothing really changed in their lives after receiving a
label.
This stage in the career of a person with a learning disability is essential to two of my
hypotheses:
Ho3: Incorporating one’s learning disability into one’s identity through a process of acceptance
and adjustment takes emotional work that declines over time but never completely diminishes,
and this acceptance leads to strengthened self-realization,
And
Ho6: The label of learning disability is positively incorporated into one’s identity through a
process of acceptance and adjustment which leads to a sense of relief.
After testing and diagnosis, many people who received the official label of a learning disability
had emotional labor and self-maintenance to do in order to maintain their sense of self, being,
and identity. This process of self-acceptance typically lead to a source of strength and
accomplishment, sometimes a pride in oneself for pushing through the challenges of learning in a
way that contrasts to the dominant learning paradigms. However, it is important to note that not
all people experienced this stage of acceptance in the same way, and a couple people, after
testing and diagnosis, experienced little to no change at all as far as emotion work goes. It is
imperative to stress that incorporating the label of learning disability into one’s sense of being is
a unique process that is different for everyone, and although there was a common thread of
acceptance, strength and relief, there were also several different responses (including rejection,
ambivalence, and indifference).
Accepting one’s learning disability and integrating the label into a sense of self seems to lead to
a sense of relief and self-identified forward progress. Acceptance means allowing the diagnosis
to be a real and true part of one’s life, confronting this facet of one’s being, and working to make
positive progress in the way in which one learns with the learning difference rather than working
against it or trying to change it. Person B describes this perfectly:
“But I didn’t make a connection to ADD until this one psychiatrist started talking to me
about it. So it’s like I always had—I mean, it was kinda like an answer to some problems
I was having before. It just gave me the name for what was actually going on and I
thought, I realized it wasn’t just me.”
The official diagnosis was the answer to this person. They accepted the diagnosis as legitimate
and as something that was going to benefit them. They go on to describe this feeling:
How did being diagnosed with a learning disability make you feel?
“I was kind of relieved actually. At first I was freaked out but I was also relieved. Prior to
being diagnosed, it was very difficult. I just thought I was crazy, I had all these things
that were ADD but I didn’t know that so I thought I was just crazy. So once I was
diagnosed it made a huge difference. I was able to go back to school. That was a major
difference. I tried school when I was in my 20s and that was a miserable experience.
After I was diagnosed I went to TC3 and it was a completely different experience. I could
do the work and I was successful.
So would you say your learning disability played a role in stopping school and starting
again?
“Yeah. Well what really made the difference was treatment. The diagnosis and
treatment.”
Do you have anything else to say about how it affected your life?
“Um, No, I guess I would say I felt relieved, it relaxed me because I realized I wasn’t
insane, and there was something that could be done about what was going on.”
According to Person B, acceptance leads to a sense of relief because the label leads to a solution
to a problem.
These feelings are mimicked in the response of person J. This person feels a sense of relief after
the diagnosis as well, and was familiar with this process which they relate to a previous
diagnosis of bipolar disorder:
How did being diagnosed with a LD make you feel?
“It’s like any disability, it’s not the most joyous thing ever, sometimes it’s more of a
relief, depending, like um, if the doctor said, oh no you don’t have ADD then I would
have thought, well, oh, no, why am I not focusing? It’s often like oh no I’m gonna have
to deal with this too. I kind of accepted it and moved forward. I think a lot of it had to do
with me being bipolar because when you’re bipolar you have to figure yourself out. If
you’re either, or, you have to figure out what’s “you” and what’s the “or”. Sometimes it’s
both. With dysgraphia it’s not so much of a jump. It’s like, okay, and just figuring out
new ways to deal with things. My reaction was, I guess I’m gonna have to deal with that
now, where do I start?”
Acceptance also means taking the diagnosis and working with it instead of against it. Person A
describes how they came to live after being diagnosed:
“. . . being 27 years old I’ve learned how to manage it. What I was told early on when I
first got diagnosed was that I would grow out of my LD in my mid-twenties, so I was
excited for this, like oh, good, here we go, I’m gonna get over this. But you don’t grow
out of it, you just learn how to manage it. So I work just like everyone else but I have to
use certain tricks that I’ve developed over the years.”
This idea of managing rather than ridding oneself of the learning disability is the meat of what it
means to accept oneself. Rather than trying to overcome this aspect of identity, it is made a part
of who one is and therefore, the person is able to better themselves in the ways that they need to
better themselves in order to succeed. Another person told of their similar experience, whom will
be called person G:
Did you immediately believe that the diagnosis was accurate?
“I think I was too young at the time to question it. As I got older . . . well I remember for
the longest time, there were social workers I had to meet with at the school and for the
longest time I would ask them, “so am I over it yet? Did I fix it? Is it fixed? Did I
overcome it?” And they kept trying to explain to me, like, there is no getting rid of it or
overcoming it, there is only living with it.” And for the longest time I wouldn’t accept
that. I wouldn’t believe it. I kept trying to figure out when I would get to go back to
normal school, when would I get to not be here anymore, for a long time I didn’t really
question it, I just thought this was going to go away. It took a really long time for me to
understand that this is actually what is going on.”
Person G also describes how maintaining a positive attitude requires emotional work and
maintenance of the self. They say:
“It’s a lot of mental work, stay positive, stay positive, because it is a constant struggle at
times.”
This is the emotional work I am referring to in my third hypothesis. People diagnosed with a
learning disability must continually work at how they hold meaning to their diagnosis in society,
which is a “job” in itself, and therefore the career metaphor works well.
Person D describes how being diagnosed with a learning disability lead them to develop a sense
of self-sufficiency and a sense of self-empowerment:
How did the diagnosis affect your life?
“Um, I, it, in my case it affected me in more of a positive way than a negative way, I have
in a way become my own best advocate, I have to do everything for myself, I realized
that I have to compete ten times harder to be at the level where everyone else is naturally
at which is a downside, but I do have a lot of resources even still at college, I still have
my plan and I still have special accommodations that I get to utilize because of it which
have greatly impacted me for the better and I don’t know where I would be without them,
but it really just has made me a stronger person, I realized that, you know, nothing’s
going to get done unless I put in %110 so it’s really just made me a hardworking,
determined person.”
Person H describes the same thing, this idea of standing up for oneself as a positive result of
accepting the learning disability and moving forward:
How did the LD affect your life?
“School was never really fun. And I’ve had to learn how to advocate for myself. Learning
to take medicine.”
Person L talks about how having a learning disability makes them hard-working and dedicated,
and even particularly guarded:
“I always try to work harder than other students, I try to start work on assignments earlier
than other people, I have a great difficulty taking notes in class, I generally hide it, I hide
the diagnosis itself, I just don’t tell people, I deflect it, I don’t give them any
information.”
Learning to manage one’s needs seems to be a positive outcome of acceptance. Acceptance, of
course, might not come naturally at first. Some people were not immediately open to this new
aspect of their identity. Person I tells us that initially, they were not going to accept the diagnosis,
but through a process of emotional work and learning about oneself, they came to a deeper
understanding and acceptance:
Did these feelings, as you got treatment, did these feelings change over time?
“My feelings really did change, for the most part, it was early on, flat-out rejection and
questioning the credibility of the diagnosis itself. Which is interesting, as Asperger’s as a
diagnosis is dying out. The primary purpose of the diagnosis is to have a word to use to
cite accommodations you need in school. That’s really the only purpose of it and my
therapist backs that up. I didn’t really feel that at first but later on I came to understand it
and accept it as true.”
The perspective of Person I is particularly interesting because the label is seen more of an
explanation to the external world than a key identity facet.
Not everyone found strength and self-empowerment through the labeling process. Some people,
such as Person C, were indifferent to the diagnosis.
How did the diagnosis affect your life?
“Not really too much, I guess it helped with taking tests or whatever, the extra time was
very needed. I just couldn’t take the tests in the right amount of time. Socially it didn’t
change anything. They just called it something, it doesn’t change how I’m going to be or
how I react to the environment.”
When they diagnosed you did they immediately believe it was accurate?
“Yeah, I didn’t have a hard time believing it. At a certain point I was like, there are a lot
of people who are over diagnosed with it but I genuinely believed that the signs they
talked about were intensified for me. Compared to other kids who are “hyper” or
whatever.”
There was also a feeling of ambivalence in some of the people who were diagnosed with a
learning disability. This manifested in many forms. In person A, we hear that the diagnosis is
essentially accepted, however, there is still uncertainty about diagnosis and treatment, and what it
all means to receive this process at such a young age:
“I do believe people have ADHD I do believe I probably have it, so there must have been
some truth to what they were doing (the blocks and mazes) at the same time it is
extremely difficult to diagnose, I believe they are treating it completely wrong, they are
treating students to pacify them to make them easier to handle for the teachers. That’s
really the overall goal, it’s not to help the kid, it’s to make them more manageable.”
Person A, like other people interviewed in my study, was suspicious about the process of being
labeled with a learning disability—is this process really for the benefit of the person labeled, or
the benefit of the system surrounding the person (the bureaucratic elementary school)? This
seems to create a sense of resigned acceptance and an attitude of suspicion, mixed feelings about
the legitimacy of the labeling process.
Person F shares this sense of suspicion, especially of the label itself:
When you were diagnosed did you immediately believe the diagnosis was accurate?
“No, I still don’t to this day. I don’t—the whole thing with ADHD I don’t really believe
in it, I think it’s more of my personal reaction to the system of schooling that I was in.
Dyslexia is like a different mindset, it just hasn’t affected me now though. I took the test
and they said I was so I guess I can’t really argue with that, I guess I don’t feel burdened
by the diagnosis. It’s not something I think about I guess. I feel like I was kind of just left
out and because I was able to afford it I was able to go to this school. But like to group
me as someone who is dyslexic, like in this category, is like a category of forgotten
children.”
This last line, “category of forgotten children,” indicates that Person F feels as if people with
learning disabilities are given labels and/or pills and are swept to the side of the educational
paradigm, so to speak, because they aren’t really being helped—like person A says, these people
are being pacified or “kept under control” enough to manage. If learning disabilities were
thought of as learning differences or different mindsets as the author of this passage claims, then
maybe they wouldn’t be so quickly labeled, medicated, and then never discussed again. Person F
goes on to say:
How did being diagnosed with a LD make you feel?
“It didn’t change too much because I felt shitty before. I already knew I wasn’t doing too
well so it was just like a thing. I didn’t think about it until I went to the new high school
and started doing better and then I thought maybe there’s something to this. I thought it
might just be because it was easier and I was still stupid. It was like a self-esteem thing. It
involved my school experience, having to deal with it.”
So being labeled with a learning disability didn’t really change too much about this person’s
sense of self, they still struggled in the academic world until they reached high school and started
believing in the diagnosis (“there’s something to this”). This is when the label of a learning
disability seemed to earn some legitimacy.
Person C embodies these mixed feelings of legitimacy but manifests this ambivalence towards
the medication process, which is my fourth hypothesis: Ho4: There are certain aspects of living
with a learning disability, such as medicalization, that one has to work very hard to hide and
often create feelings of ambivalence. Person C is also suspicious of a system that deems
minorities as problems and then medicates them for the benefit of the cohesive progress of the
system, because it is a high cost to Person C to be medicated:
How did being diagnosed make you feel?
“Fine, it didn’t like—it wasn’t—painful or anything, it didn’t shatter my world. I didn’t
like the idea of medication. I thought it was a very dumb solution for things.”
How did the medication make you feel?
“It made me agitated, made me focus on things so that I couldn’t sleep. It was mentally
unhealthy. You’re not in your right state of mind, in my opinion. It’s like, why is having
ADHD bad? Like, you’re trying to make me better at taking tests it’s like, if I just have
extra time that is perfectly alright, I didn’t really need the medication too.”
Did your feelings change over time after you were diagnosed?
“My feelings changed about how I viewed medication and about altering people to fit a
social norm. From ADHD medication it’s like what is normal, like mentally or
biologically, like, just because, like 80 or 60 percent of the population is that way, does
that make the rest of them not normal, do we need to change them to become
advantageous to society, like, why do they get to design what is normal?”
Person C goes on to explain the labeling process not in terms of acceptance and incorporation,
but more of a minimization technique in which this person looks at the learning disability as such
a miniscule part of who they are that they do not have a process of integration, a miniscule part
that shouldn’t define them. This is more of an idea of having a central self and aspects of selforbiting around this central self: picture the sun as the “central self” and orbiting planets as facets
of our selves. All are integral for creating the solar system, yet have different relationships to this
sense of centrality. ADD, to Person C, would only be a miniscule part of their overt solar system
self. To take this ambivalence and suspicion a step further, Person C thinks that a label is just
trying to put a person’s personality in a box, incorrectly dissecting the solar system self. Person
C is essentially saying that they are labelled with a learning disability but the real problem is that
they are being forced to fit into someone else’s world. Person C explores this here:
“Maybe like . . . in terms of ADHD, because that’s what I have, I guess it’s like, just
because you call it something or you call it a diagnosis, it doesn’t define who a person is,
because maybe it’s better off that someone is hyper and has a lot of energy, and to call it
a diagnosis kind of puts a person down. Because it’s like, Oh, I only have a lot energy
because I have ADHD but no, it’s who a person is in a sense, just because you call it
something doesn’t make it any less fascinating or amazing, doesn’t mean you actually
understand it, doesn’t mean you know who I am now. It’s just part of your personality, I
don’t understand how you can call it ADHD. Giving it a label doesn’t mean anything.
You just give them something to identify, it’s not just who they are. I wish I could speak
on behalf of other people with learning disabilities. Just because someone can’t read well,
doesn’t mean they’re not smart. Just because you’re dyslexic doesn’t mean you’re not
intelligent.”
Person C wants it to be made clear that a person isn’t their disability, a person is a person who
has been labeled with a disability and this is only a “disability” because the dominant paradigm
defines it as so, when really they feel as if it is just a part of their personality (or to continue with
the solar system metaphor, it is one of the planets to their suns).
This questioning of the institution shows distrust and ambivalence of the labeling process itself
and the other aspects of the process surrounding professional labeling. It is clear that there is a
diversity of emotions when it comes to incorporating a label into one’s identity. One must
wonder what causes this diversity, and why some people accept their label while others rebel
against the label they receive.
[Stage Four] Processing Stigma
Ho1: The label of learning disability is initially received with feelings of stigmatization, but these
feelings often decline over time. As I continue to learn about identity and the labels that we carry
with us surrounding our humanness, I was suspicious that those who are labeled with learning
difference in our society, because they deviate from mainstream learning techniques and
information processing, would be greeted with stigma, feelings of exclusion, and feelings of
oppression. My instinct was that these feelings would diminish over time, for many possible
reasons such as finding a more inclusive environment and developing deep personal strength, for
learning how to think of a sense of self, etc. My first hypothesis is supported. This is illustrated
in the following quote from person A, who received a diagnosis when they were seven years of
age:
“Did I disappoint you guys [“you guys” being family] was my first thought, but then I
felt privileged because I was receiving ‘special help.’ Then people started making fun of
each other in fifth grade. Sometimes they would give me candy with my meds and I just
felt like I was getting special treatment, I didn’t really know what was going on. People
started saying if you have ADHD, then you are retarded. In high school rebellious years, I
started saying its pride. At this point, I don’t care at all. I don’t feel bad at all. The reason
why I’m talking to you and the reason why I talk to other people is to help kids get better
treatment.”
So initially, peers saw this person as less intelligent because of their learning difference. This
aspect of their self caused other people to doubt their legitimacy because they were not like the
other children. Person A began to be prideful of who they were and turned this sense of shame
around, and by this point in their life, they have completely accepted that they have ADHD and
this is simply the way that Person A navigates the world. Therefore, feelings of stigmatization
decrease over time.
Something similar happened to this Ithaca College Student (person F). They believed for a long
time that there was something wrong with them, like their intelligence wasn’t comparable to
others, but then began to see themselves in a new light after taking challenging college-level
classes in high school and getting into college:
“I was really young too when it happened so I didn’t really understand it, they just said,
“you’re this way” for a long time I just thought I was really stupid, I did not really think
very highly of myself cuz you try really hard on the test and you get it back and you’re
failing you’re like what’s the point of trying now? The diagnosis didn’t really change that
for me, it wasn’t really until after high school until I was like, alright, I took different AP
classes taught by different teachers, so I was like, okay . . . you know?”
What I believe this person is trying to say is that by taking challenging courses and showing that
they could legitimately be successful, they were proving to themselves and to others that they
were not “stupid” as they always felt they were. By legitimizing their intelligence, they attempt
to decrease stigma surrounding themselves (the stigma that unintelligence and learning disability
is connected). The system made them feel inadequate because it forced them to learn and operate
in a way that was counterintuitive to their learning style, but once they could prove that they
could actually master the system, their intelligence felt real in comparison with the norm.
Person L describes how learning disabilities back home while they were growing up were
stigmatized, and this stigmatization has decreased but has not completely evaporated to this day:
Was the LD talked about back home?
“It was joked about in a derogatory way. It was clear that there was something wrong
with us because we were in this special school.”
How did that make you feel?
“A lot of the times I didn’t appreciate a lot of the things teachers would do when they
would suggest a medication or have mandatory therapy sessions, those were annoying
because they actually cut into classes we liked to go to. Derogatory language continues at
Ithaca College to some degree but it’s not the same. Most people in college don’t know
what ADD and ADHD is, so they don’t know how to recognize it, it’s more like a generic
joke. They don’t have the same degree of knowledge.”
Person H seems to have a similar outlook towards stigmatization, supporting my first hypothesis:
Have you ever been treated differently after telling others that you have a LD?
“In college, no. Before college, yeah. Before college wasn’t fun. It’s just college and I
think you’re more mature by college.”
Person A makes a comment that supports this idea of reduced stigma:
“People don’t treat me differently anymore when I tell them I have a LD for the most
part.”
It seems as if stigma surrounding learning disabilities has decreased as a natural process of
maturation and learning how to be an empathetic human being, but stigmatization never
completely diminishes. There is still a strong connection to being “stupid” with being “learning
disabled.” I outline this idea in my second hypothesis.
Ho2: Despite how people with learning differences have grown to cope with their learning
techniques and are now navigating their selves as Ithaca College students, the idea of being
learning disabled is still linked very closely to the idea of being unintelligent or inadequate.
Learning disabilities still seemed to be wrapped up in inadequacy, and this striking example,
described by Person D, illustrates this existing stigma very well:
“I’ll hear people in the library like the other day, I heard a group of girls talking and
saying, “yeah, you can go to the students with disabilities office and get extra time on
tests and everything” like this and that and I don’t think they understood the system
behind just having accommodations and another girl said, “Well, I’m not that stupid” you
know, and they’re just, you know, it’s just completely—I don’t take offense to people’s
ignorance anymore, but there’s definitely a lot alive and well people still think that
people who need extra time in general are slower, more delayed. I really try to be an
activist about these types of things, and get involved, but if it’s not my place directly, I
don’t want to cause any further confrontation.”
There couldn’t be a better example of stigma in action—literally, a student openly admitting that
learning disability is the same as extreme stupidity.
To some, this lingering stigma affects the way they navigate the world. Person B states:
How does it affect how you connect with other people? Do you notice that ADD affects
the way you connect with other people?
“I think so, sometimes. I’m more guarded, especially at school. At tc3 the dis office was
called the baker center so you could say you were in the baker center, some people didn’t
know where or what that was so it was kind of like hiding it. I was intentionally not
saying the disability office because I was concerned about judgment.”
I found Person G’s response particularly interesting. This shows the ambivalent attitude towards
labels of learning disabilities and also the verbal, internalized confusion between where stigma
stops and reality begins:
Do you try to keep your LD somewhat secret?
“Yeah, as a student I try to overachieve, I don’t understand a grey area, I either work
really hard and do well or fail. So I tend to . . . I mean, people don’t . . . think that I have
it because of how hard I work and how seriously I take school. And I’m good at my
major and certain aspects of that so once I’m confident, I feel like I’m doing, like
sometimes I just want people to think that okay, “today, she’s not someone with a
learning disability, today she’s a smart girl.” Not that it’s—see like, sometimes it’s hard,
even my language, it’s not that I’m not smart but there are times when I’m like—see,
there’s this weird invisible line.”
So maybe there are preconceived notions that if you have a learning disability you are
not smart?
“Mhm. And I want to prove them wrong. “
Person I was very aware of the societal connection between stupidity and learning disability and
defended learning difference as another way to exist:
“There was a while when I would tell no one about my LD, there was a time when I
would flat out tell everyone I knew, and now, it’s only if it comes up in conversation. If it
comes up in convo, people tend to be rather surprised. Again, my verbal reasoning
score is very high, and I give this vibe of sophistication in my language and diction, so
again, their minds go back to the stereotype that a person with a mental disability cannot
be intelligent. Intelligence and disability in the mental world are two different things,
unrelated. Which of course is completely false. Especially now with historians looking
back saying Elbert Einstein was probably autistic, all these people that are extremely
intelligent have learning disabilities of some sort.”
[Stage 5] Considering How Others Respond to the Person with a Learning Disability
The last aspect of living with a learning disability is simply having to think about how society
interprets the self. This stage can happen at any time during the career of a person with a learning
disability, and seems to, in fact, happen throughout one’s life. The last hypothesis I would like to
explore, Ho5: People with learning disabilities frequently feel like their disabilities are not taken
seriously in society, shows that of the people in my sample size of 12 Ithaca College students,
people often feel that society illegitimates their learning difference.
Person A supports this hypothesis, especially since this person is older and came of age during a
time when learning disability was less known even than today:
“Back in the era when I was diagnosed (I’m 27) a lot of people didn’t believe it was a
legitimate disorder, just kids acting up. General culture, I think still believes that learning
disabilities are negative and something to be ashamed of. I think that the general culture
is still ignorant about what is going on. ”
Person B has the same reaction:
“There’s still a lot of people who think that mental illness and learning disabilities is selfindulgent and not real. Every time I read something in the New York Times about ADD
or pharmaceuticals-whenever there’s an article about that they give an angle that these
aren’t real. There’s still a population of people that feel that you just need to pull
yourself up by your bootstraps or just focus, or you’re not doing that. Outside of school
I’ve noticed this more so.”
These feelings of illegitimacy happen right here, on the Ithaca College campus, according to
Person B:
“I’ve seen these things in intercom about how to give exams up at the disability office for
faculty. There was one that was like, “do you think your student is pulling your leg,” or
maybe “do you think we’re coddling them too much?” And it’s like, well no! And that’s
coming from somebody here, at the school so that disappointed me.”
Hmm, yeah, it’s like people see it as an extraneous privilege or something instead of a
real need . . .
“Right, exactly they don’t see it as leveling the playing field, they see it as coddling
students and there was something about are they gonna be ready for the real world if
they’re coddled now, so I was disappointed. This came from some discussion that was
gonna happen with faculty or some kind of seminar, I saw it on intercom. This made me a
little less comfortable with the faculty to know some might think that and think some
might be resentful with giving accommodations, you know?”
Person C feels like he is not taken seriously. He is judged as “manipulative” by his friends for
his accommodations:
“My friend back at home said “you don’t need it,” you don’t need the extra time. I’m
smarter than a lot of my friends. Sometimes they get confused like just because they think
because I’m intelligent I shouldn’t have a learning disability. Because I’m intelligent,
they think I worked the system into allowing me to have extra time. But really it’s just
like, I just have ADHD therefore I can’t think clearly sometimes.”
Person H describes a direct conflict with her teacher which shows that sometimes, learning
disabilities are not taken seriously even by faculty at Ithaca College:
Do you feel like it’s well received when you tell the teacher?
“For the most part, occasionally, they don’t wanna—like I had one teacher that flat out
said it wasn’t fair.”
Really? Wow, can you describe that?
“She had a problem with one of them, because it doesn’t specify how much extra time I
was supposed to get on tests and that just bugged her, cuz she didn’t have a concrete
time, but then another teacher asked what I needed it for and why, because she didn’t
want to hand me the Powerpoints because she saw it as if she gave me the Powerpoints
then I wouldn’t be paying attention in class but it’s really the exact opposite, if you don’t
give me the Powerpoints then I won’t pay attention in class. It made me feel a little
annoyed because they’re the OT professors and they’re the ones that deal with this
population so—so I’m just annoyed, it’s like okay really? You’ve had me for five years,
you’re the advisor of the honor society I’m in so you know I’m a good student, you’ve
had me in class before, you know I’m a good student, so what’s your problem?”
Some students have been severely discriminated against, like student I, in which legal action had
to be taken:
“I went to a community college back home for about three years during high school. And
I mean the whole bureaucratic landscape throughout that school was outrageously
discriminatory. Y first meeting with the office of disabilities director, I left that meeting
almost in tears, because basically, when I came with documentation of my diagnosis, I
was met with an attitude of, “prove it. Don’t use this as an advantage.” They were
genuinely trying to turn me away. We ended up suing the school three times, all three
cases settled, one of which was done through the department of education at D.C. We had
to fight tooth and nail for years to get them to accommodate me for ways in which the
Americans with Disabilities Act says they have to accommodate for me. They were not
giving me the accommodations that the federal government says I am to receive. Ithaca
College seems to be more open minded. It’s been really rough being someone who needs
accommodations. It’s been really tough.”
Person L describes how their learning disability is often used as a joke, and touches briefly on
the usage of prescription medication for performance enhancing drugs for school papers (a whole
separate matter that deserves a research project in itself):
What do your friends ever say about learning disabilities?
“It isn’t something many people know about and medications are seen as useful to most
people, and most of my friends have used Adderall at least to write a paper or do
something helpful along those lines. It’s usually a joke or someone blames it as a reason
not to pay attention.”
Conclusions
Living with a label, particularly labels deemed as learning disabilities that carry stigmatization
and stereotypes in the eyes of the generalized other, requires different stages of personal
development and identity maintenance that ultimately turns into a “career,” so to speak. The
career of an individual person with a learning disability is subjective and diverse yet also general
and unified through common coping techniques and a general understanding of what it means to
live with a learning disability. No two careers are the same; throughout my research, the
experience of almost all twelve of my interviewees are unique yet simultaneously exhibit threads
of connected experience and united struggle. This qualitative study of the career of twelve
different Ithaca College students labeled with a learning disability--five women, six men, and
one gender queer individual ranging in ages from 18 to 44--examines the diversity of paths
followed by these students and the commonalities between their experiences at different stages
of their lives with a label. The subjectivity and individual nature of identity maintenance must
receive respect. My hypotheses are supported with substantial evidence in the form of quotations
and documentation of personal experience—however, it is important to recognize the limitations
of my sample. I was only able to interview 12 people, and all people interviewed are students of
Ithaca College, which could imply that no matter their learning disabilities, they still managed to
reach a high level of academic achievement. It would be interesting to learn of the experiences of
people with learning disabilities who still have difficulty in school and may not be able to attend
a college or university. It is also important to note that these 12 people came to me and most
people had a passion for helping others and for providing a sense of advocacy and justice for
people with learning disabilities. Perhaps this study would detail a much different career path if
this were accommodated for.
Implications
My study implies that although stigmatization is reduced over time of labels of learning
difference, the idea of “stupidity” and “learning disability” is still frequently connected, which
implies that people with learning disabilities face oppression. It is also important to note that
learning disabilities are typically invisible, in the mind of the person, and therefore may not
receive the attention they deserve. It was also alarming to me how often people reported that they
do not feel their disability is taken seriously, or that their accommodations were seen as
luxurious and potentially unfair advantages. Perhaps we need to consider a more universal model
of learning for everyone, because if anything, this study implies that we do not all learn or learn
well under the same educational paradigm. Why not extend test time for everyone, or at least let
the option exist? Why not incorporate visual, auditory, and physical hands-on options to engage
multiple learning styles in the classroom? It seems as if a more inclusive learning paradigm is
essential to the success of all, or at least considering diverse learning styles as difference and
nonconformity rather than disability. Disability should equal diversity, not oppression. However,
there are some situations where discrimination based on disability is simply unavoidable: for
example, a blind man cannot be a bus driver, because being blind would literally hinder the blind
bus driver from being able to do their job. The same can be said of certain learning disabilities,
for example, in a position where instant recall is necessary, a person who cannot recall key
information quickly would not be able to fulfill important tasks on the job. But is a blind person
“stupid” or “lesser” because of their disability? Of course not—blindness is simply how they
exist, and should not be thought the lesser of it. The same can be said of learning disabilities, and
part of the implications of my study are that holistically, as a society, we must understand that
not everyone learns the same way. The education system is modeled for a particular kind of
learning, and not everyone functions this way, leaving the people outside the bulge of the bell
curve disadvantaged and stigmatized. Being on the flip side of the student-teacher relationship, I
also understand that it is difficult to accommodate for every student under the available time,
resources, and expectations required from that educational institution. But making a safe space
for these accommodations, and a safe space for people to learn and grow is imperative to the
success of our nation, and those who learn differently should not be left behind, the “forgotten
children” one of my interviewees mentioned. Many “learning disabled” minds are indeed
incredibly bright: instead of making these fish try to survive in the jungle, maybe we should try
to create a river or a stream for them to swim to success.
APPENDIX
INTERVIEW QUESTIONS FOR THOSE THAT HAVE A LEARNING DISABILITY
Diagnosis
As you know, my study is about experiences of being learning disabled. To participate in my
study, you do have to be learning disabled.
Have you ever been tested for a learning disability?
If yes, what was the outcome of the test?
If positive, what type of LD were you told you had?
Can you tell me more about how you came to be diagnosed with a LD? How did that happen?
How were you told you had a LD?
How old were you during the diagnosis? How did the diagnosis affect your life?
Did you immediately believe that the diagnosis was accurate?
How did being diagnosed with a learning disability make you feel?
Did these feelings change over time?
How do you disclose this information with other people?
Do you try to keep your LD somewhat secret?
Did people treat you differently when they learned of your learning disability?
Community Understanding
Is the idea of having a learning disability discussed in your community? At Ithaca College? In
your hometown?
What kind of attention attracts labels of learning disabilities?
What do your friends say about learning disabilities?
Do you know of resources on campus for learning disabilities?
Are there resources available in your hometown?
Family Understanding
Does your family know about your diagnosis?
Would you tell your family? If no, why?
Does anyone in your family have a diagnosis? How is this received?
Peer/Work Relationships Understanding
How has your learning disability affected your life? How does it affect how you connect with
other people?
Do you/would you disclose your label with others?
Friends? Employees/ers?
Does your diagnosis affect the way you pursue relationships with others?
Do you have anything else to say?