Incorporating Learning Disability Into Sense of Self

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 afishby 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 first-come 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 re-diagnosed 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: