Understanding the Educational Experiences of Individuals with Learning Disabilities: A
Narrative Perspective
A dissertation submitted to the Graduate School of the University of Cincinnati in partial
fulfillment of the requirements for the degree of
Doctor of Philosophy
Educational Studies
College of Education, Criminal Justice, and Human Services
University of Cincinnati
Cincinnati, Ohio
March 2018
by
Samantha Marita
M.A. University of Cincinnati
August 2016
B.S. University of Cincinnati
April 2014
Committee Chair: Casey Hord, Ph.D.
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Abstract
Students with learning disabilities are the largest population of students receiving special education services and accommodations in schools. There is a large body of research on the academic needs of these students and potential interventions to support them in the classroom.
But, there is substantially less research on the overall educational experiences of students with learning disabilities. In addition, there is a need for research that gives voice to individuals with learning disabilities to add to the conversation about how to support students with learning disabilities in achieving academic and personal success. The purposes of this study were to better understand the educational experiences of individuals with learning disabilities, give voice to their perspectives, and inform practice. An oral history narrative methodology was utilized to gain the stories and perspectives of five college students with learning disabilities. Findings included restoried narratives from the perspectives of the participants and general themes that emerged from thematic analysis of the data. Themes that emerged included: strength is gained from disability, teacher understanding can change educational experience, social implications surround disability, support from outside of school plays a role in life and success, educational policies may not be the best fit for every student, and disability stigma has changed. Discussion of these findings centers on the role of first-person perspectives for better understanding the experiences of individual with learning disabilities. Recommendations for practice are discussed including the need for teachers to maintain high expectations for students with learning disabilities and the importance of developing personal understanding of their students.
Recommendations for research include further investigation of the findings of this study in larger projects as well as continued emphasis on the potential of research that gives voice to individuals with learning disabilities to reduce stigma and promote better understanding.
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Acknowledgements
I would like to thank my advisor and committee chair, Dr. Casey Hord, for all the opportunities he provided me during my time at the University of Cincinnati as well as everything he taught me. I would not be here without your confidence in me. I would also like to thank my committee members, Dr. Anna DeJarnette and Dr. Song Ju for their support, guidance, and expertise during each step of my doctoral program. I appreciate the time all three of you have taken to mentor me and improve my research. I would like to thank the University of Cincinnati Graduate School for funding through the Dean’s Fellowship that supported my final year of doctoral work and made my dissertation possible.
I would like to thank the study participants for their willingness to share their stories and perspectives with me. I am tremendously grateful for the commitment each of you showed toward my project and am inspired by your dedication to improving the experiences of others with learning disabilities.
Finally, I would like to thank my family for their immeasurable support in everything I do. Thank you for always encouraging and believing in me.
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Table of Contents
Abstract ……………………………………………………………………………………..…… ii
Acknowledgements …………………..…………………………………………...……….……. iv
Table of Contents …………………………………………………………………...... ………..... v
List of Tables ………………………………………………………………………………...… vii
Introduction …………………...……………………….………………………………………… 1
Review of the Literature ……………………………………………………………………..… 11
Method ………………………………………………………………………….……………… 24
Research Procedures …………………………………………………………………… 25
Recruiting and Participants ………………………………………………..…… 25
Setting ……………………………………………………………..…………… 29
Interview Procedures ………………...………………………………………… 30
Data Collection ………………………………………………………………………… 32
Interview Questions ………………………………….………………………… 34
Data Analysis …………………………………………………………………...……… 35
Validity ………………………………………………………………………………… 37
Ethical Considerations …………………………………………………………….…… 39
Findings ……………………………………………………………………………………...… 40
Ella’s Narrative ………………………………………………………………………… 40
Gwen’s Narrative ………………………………………………………….…………… 49
Jess’s Narrative ………………………………………………………………………… 59
Nick’s Narrative ……………………………………………………………...………… 67
Reid’s Narrative ……………………………………………………………...………… 76
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Thematic Analysis Findings …………………………………………………………… 85
Strength is Gained from Disability …………………………………..………… 85
Teacher Understanding Can Change Educational Experience ………………… 86
Social Implications Surround Disability ……………………………………..… 93
Support from Outside of School Plays a Role in Life and Success ……….…… 95
Education Policies May Not Be the Best Fit for Every Student ………..……… 97
Disability Stigma Has Changed ……………………..………………...……… 100
Discussion ………………………………………………………………………………..…… 107
Limitations ……………………………………………………………………………. 115
Implications for Practice ……………………………………………………..……….. 117
Implications for Research …………………………………………………….………. 118
References …………………………………………………………………………………..… 121
Appendices ……………………………………………………………………………….…… 130
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List of Tables
Table 1: Summary of Previous First-Person Literature from Individuals with Learning
Disabilities …………………………………………………………………………….……….. 19
Table 2: Types of Interview Each Week by Participant ………………………………….……. 30
Table 3: Weekly Interview Topics ……………………………………………………….…….. 33
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Understanding the Educational Experiences of Individuals with Learning Disabilities: A
Narrative Perspective
Current legislation has called for stronger accountability for students with disabilities in the classroom. The Individuals with Disabilities Education Act of 2004 (IDEA), Section 504 of
the Rehabilitation Act of 1973 (Section 504), and the Every Student Succeeds Act of 2015
(ESSA; preceded by the No Child Left Behind Act of 2001) all protect the educational rights of
students with disabilities. Under these pieces of legislation, students with disabilities are given
access to general education curriculum and the supports and accommodations necessary to be
academically successful and prepared for post-secondary opportunities (ESSA, 2015; IDEA,
2004).
One of the 13 disability categories included under IDEA is specific learning disability.
This disability category is defined as:
A disorder in one or more of the basic psychological processes involved in understanding
or in using language, spoken or written, that may manifest itself in the imperfect ability to
listen, think, speak, read, write, spell, or to do mathematical calculations, including
conditions such as perceptual disabilities, brain injury, minimal brain dysfunction,
dyslexia, and developmental aphasia. (IDEA, 2004; Ohio Department of Education,
2017)
During the 2015-2016 school year, 4.6% of school-aged children received special education
services for specific learning disabilities under IDEA, making learning disabilities the largest
disability category for students (Cortiella & Horowitz, 2014; U.S. Department of Education,
2017). This does not include students with learning disabilities receiving accommodations under
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Section 504 or students with unidentified learning disabilities. It has been estimated that between 5-8% of all school-aged students have a learning disability (Geary, 2004).
Background on Learning Disabilities
Learning disabilities are a heterogeneous group of neurologically-based differences that impact individuals’ cognitive processing, learning, and other life functions (Franz, Ascherman,
& Shaftel, 2017; National Joint Committee on Learning Disabilities [NJCLD], 2011). These differences often impact an individual’s academic performance in one or more areas including: listening comprehension, verbal expression, basic reading skills, reading fluency, reading comprehension, written expression, mathematical computation, and mathematical problem solving (Franz et al., 2017; IDEA, 2004). The level of severity of difficulties can vary widely by individual (NJCLD, 2011). Currently, there is little understanding of why these differences occur, but great strides have been made to better understand the challenges individuals with learning disabilities face and to support them to be successful students and members of society
(Cortiella & Horowitz, 2014; Franz et al., 2017).
While the term learning disabilities covers a variety of individual disabilities, the most common subtypes impact students’ reading abilities, mathematics abilities, and written expression. IDEA (2004) specifically names dyslexia, dysgraphia, and dyscalculia as specific learning disability subtypes. Additionally, broader categories, such as reading learning disability, or other disorders, such as auditory processing disorder, visual processing disorder, and nonverbal learning disabilities, are often considered learning disabilities as well (for more detailed information on the subtypes of learning disabilities, see Cortiella & Horowitz, 2014).
Learning disabilities can occur alongside other diagnoses including other disabilities, social-
2 emotional difficulties, or behavioral challenges (Cortiella & Horowitz, 2014; Franz et al., 2017;
NJCLD, 2011).
Many misconceptions and unknowns are commonly associated with learning disabilities.
Sometimes, these students are mistaken as lazy or lacking motivation, even when students are putting in effort beyond their higher-achieving peers (Cortiella & Horowitz, 2014; NJCLD,
2011; Shifrer, 2013). A second misconception is that high-quality instruction or interventions can prevent or cure learning disabilities. While high-quality instruction, intervention, and accommodations are often essential for the success of individuals with learning disabilities, their neurological differences are not eliminated by educational strategies (NJCLD, 2011). A third common misconception is that children will “grow out of” their disability; even though many students with learning disabilities begin to academically perform similar to students without disabilities, the neurological differences do not go away (Cortiella & Horowitz, 2014; Goldberg,
Higgins, Raskind, & Herman, 2003; Turnbull, 2009). Since learning disabilities exist on a continuum where some individuals experience difficulties more or less severe than others, it can be challenging to determine the line that separates identification of a learning disability from academic difficulties without a learning disability. Additionally, factors such as lack of educational opportunity, poverty, emotional challenges, and cultural or linguistic differences can increase challenges with determining if a student has a learning disability or if other factors are influencing their learning and academic achievement (NJCLD, 2011).
Identification of students with learning disabilities. The identification of individuals with learning disabilities has been a point of discussion for decades (Weintraub, 2005).
Individuals can be identified in school through two different methods or be clinically diagnosed outside of school. Traditionally, learning disabilities were identified by a discrepancy between
3 an individual’s intellectual ability, measured by an IQ test, and their academic achievement (U.S.
Office of Education, 1977). However, this method was criticized as the only method for identification because some felt it required schools to wait too long before intervening, allowed students to consistently fail before providing support, and failed to identify students with learning disabilities who did not meet the rigid criteria (Reschly & Hosp, 2004; Turnbull, 2009).
With the reauthorization of IDEA in 2004, regulations for the identification of students with learning disabilities no longer required use of the discrepancy model (IDEA, 2004).
Response to intervention (RtI) was introduced as an additional permitted method of identification for individuals with learning disabilities (IDEA, 2004; Kavale & Spaulding, 2008). RtI requires the systematic application of research-based interventions, measurement of student response to interventions, and instructional decisions based on data (Kavale & Spaulding, 2008). The design of RtI was intended to prevent over-identification of learning disabilities by utilizing targeted intervention to support struggling learners (Turnbull, 2009). If a student does not make adequate progress within the tiered system of increasingly individualized interventions, identification with a learning disability is considered. However, this method of identification has been criticized as being vague, subjective, and lacking consistency, making it difficult to determine if all students are being given the same opportunities to succeed with intervention prior to identification (Hale,
Naglieri, Kaufman, & Kavale, 2004; Shifrer, 2013). Further, some researchers and policymakers are concerned that it does not include assessment of influences that could be contributing to lack of academic success such as family factors or instructional strategies that do not match the needs of the individual student (Backenson et al., 2015).
In addition to the in-school identification processes, learning disabilities can be diagnosed outside of school by a clinical professional (e.g., doctor, clinical psychologist, or
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neuropsychologist). If parents seek evaluation for a learning disability for their child from a non-
school-based clinician, the diagnosis is not the deciding factor in whether or not the student is eligible for special education services. This potential delay in qualification for special education intervention and services can cause parents or guardians to feel the school is neglecting the academic issues their child may be facing (Franz et al., 2017). However, the school team must still evaluate whether or not the student qualifies for special education services under IDEA or accommodations under Section 504. Even with a clinical diagnosis of a learning disability, the educational team must verify that the student has made insufficient academic progress with the presence of high-quality instruction in the classroom and targeted interventions as well as rule out the possibility of other diagnoses or barriers preventing academic success (Franz et al.,
2017).
There are criticisms of each method of identification for individuals with learning disabilities. Since this disability category encompasses a variety of characteristics and can impact individuals on a broad spectrum, it can be challenging to accurately and efficiently
identify students with learning disabilities (NJCLD, 2011). Lack of reliability and validity of
identification methods, over-identification of students from diverse backgrounds, lack of clarity
between low achievement and learning disabilities, and potential over-identification in general have all been recognized as points of weakness in identification procedures for learning disabilities (Backenson et al., 2015; Turnbull, 2009). However, to receive educational services and accommodations under IDEA and Section 504, students must have a recognized disability
(IDEA, 2004; Ohio Department of Education, 2011).
Supporting individuals with learning disabilities in schools. Students with learning disabilities can be supported in schools through special education services under IDEA or
5 accommodations under Section 504 of the Rehabilitation Act of 1973. IDEA protects students who have a disability that falls into one of the 13 disability categories defined in the law (see
Yell, 2012, p.67). In addition, the disability must adversely affect a child’s learning and educational performance, resulting in the need for special education services (Yell, 2012).
Eligibility for IDEA is determined on an individual basis. When a child receives special education services under IDEA, the educational team develops an Individualized Education
Program (IEP); this document details any modifications that will be made for instruction or assessment, accommodations, or additional services, such as physical, occupational, or speech therapy (IDEA, 2004; Ohio Department of Education, 2011). As part of the student’s educational team, an intervention specialist becomes the overseer of the IEP and is responsible for providing the special education modifications and accommodations included in the document.
Some students with learning disabilities do not qualify for special education services under IDEA; the educational team determines they are not eligible for these more comprehensive services (Cortiella & Horowitz, 2014; Franz et al., 2017). Instead, they may qualify for Section
504 of the Rehabilitation Act of 1973, a public law that prohibits the discrimination of individuals with physical or mental disabilities in programs or activities, including public schools
(for more information on Section 504 of the Rehabilitation Act of 1973, see Office for Civil
Rights, 2013). All students with disabilities are protected under Section 504, whether or not they are protected under IDEA (Yell, 2012). If a student does not qualify for an IEP but is protected under Section 504, an accommodation plan, often called a 504 Plan, which details the accommodations and services to be provided to them by the school is developed. Under Section
504, schools must provide students with “reasonable accommodations” that allow them to
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participate in educational programs to the extent of their peers without disabilities (Ohio
Department of Education, 2011). Section 504 protects students whose disabilities may or may
not adversely impact their learning or educational performance and does not require that students
have a special education placement (Yell, 2012).
Call for Research from the Perspectives of Individuals with Learning Disabilities
There has been a call for a change in the way we view the learning disability experience
for over 20 years (Gerber, Reiff, & Ginsberg, 1996). Students with learning disabilities often
perform significantly behind their peers without disabilities (Cortiella & Horowitz, 2014;
National Center for Education Statistics, 2013). There is a large body of research on the
academic needs of students these students and potential interventions to support them in the
classroom to address this issue, however, educational success is influenced by more than
academic achievement.
The need for research that gives voice to individuals with learning disabilities about their experiences is discussed by multiple researchers in the field (e.g., Connor, 2007; Mazher, 2012;
Reid & Button, 1995), however, little research exists from the perspectives of people with learning disabilities. Research centered on the first-person accounts of individuals with learning disabilities may allow researchers and practitioners to better understand how these students view their disabilities and education through sharing about their personal experiences (Connor, 2007;
Mazher, 2012; Reid & Button, 1995). Reid and Button (1995) comment on the potential for individuals with learning disabilities to add to the literature saying, “We do not know how they understand their problems and needs. We have studied them, planned for them, and erased them.
We have not listened to their voices” (p. 602).
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The majority of research on the characteristics of learning disabilities and the experiences
of individuals with learning disabilities involves academics who speak for and about these
individuals (Mazher, 2012; Reid & Button, 1995). There has been a call for research that
includes the perspectives of individuals with disabilities so the field can gain what they have to
add to the conversation about how to support them in achieving academic and personal success
(e.g., Block & Weatherford, 2013; Connor, 2007; Mazher, 2012; Reid & Button, 1995).
Methods such as in-depth interviews or oral history narrative are recommended to allow
individuals with learning disabilities to speak about their experiences and perspectives (Mazher,
2012). Though there has been this call for increased understanding of individuals with learning
disabilities and a change in public perception of learning disabilities (Rosetti & Henderson,
2013), there are limited recommendations from the perspectives of people with learning disabilities.
Purpose of the Study
This study will contribute to the field by continuing to fill the gap in the literature that focuses on the voices and perspectives of individuals with learning disabilities. Researchers and teachers are likely to benefit from the perspectives of students with learning disabilities about the factors that influence their individual academic and personal success. The participants’ insights into the positive aspects of their experiences as well as those needing improvement have the potential to benefit the field of education (Mazher, 2012). Their perspectives will represent another voice in the conversation of how to best support these individuals, adding to the hard work and advocacy of the practitioners and researches in the field. The purposes of the study were to better understand the educational experiences of individuals with learning disabilities in the K-12 setting, give voice to their perspectives, and inform practice. This study will contribute
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further insight into the experiences of successful individuals with learning disabilities, adding to
the body of research working toward a comprehensive and holistic understanding of these
individuals.
Research Questions
As the purpose of this study was to gain insight from the lived experiences of individuals
with learning disabilities, the research questions were derived from the mindset that increased
understanding of experiences can lead to changes in educational practice. The central research
question that drove this study was: What do the stories of individuals with learning disabilities
reveal about their educational experiences as students with disabilities? Sub-questions were developed from this central question to expand upon the implications of the participants’ experiences. The sub questions were: 1) How do individuals with learning disabilities talk about their relationships with their disabilities?; 2) What has shaped the educational experiences of individuals with learning disabilities?; and 3) What recommendations do individuals with learning disabilities have for improved practice?
Organization
This dissertation is divided into five chapters. This first chapter has situated this study
within the current general knowledge of students with learning disabilities and the need for more
research on the educational experiences of these individuals from their perspectives. Chapter
two reviews the literature surrounding the experiences of students with learning disabilities
including social factors influencing students with learning disabilities, the potential for emotional
and mental health challenges, identity development around disability, and first-person accounts of the learning disability experience. Chapter three details the narrative methodological approach utilized for the present study as well as the methods for collecting the narratives and
9 analyzing them. Chapter four presents the five restoried narratives that detail the experiences of this study’s participants as well as the thematic findings that emerged following data analysis.
Chapter five includes discussion of the narratives and thematic findings around implications for both research and practice and includes limitations of the study.
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Review of the Literature
To answer the call for research that examines the experiences of students with learning
disabilities, many researchers have explored factors beyond academic difficulties that influence
the learning and experiences of these students. As a disability category, learning disability includes a variety of diagnoses that can impact individuals across a spectrum of severity. And though this population is comprised of individuals whose diagnoses impact them in differing ways, researchers sometimes refer to students with learning disabilities as a homogeneous category of learners (Reiff, 2004). Therefore, research findings may not be relevant to the experiences of all individuals with learning disabilities. This literature review describes some of the characteristics of individuals with learning disabilities and factors that may impact their educational experiences. However, this review of the literature is not meant to be comprehensive of all factors that influence the educational experiences of individuals with learning disabilities or apply to all individuals with learning disabilities.
This review of the literature includes general findings on a variety of factors that could influence the educational experiences of students with learning disabilities, such as social factors, potential emotional and mental health challenges, self-concept, and acceptance of disability. In addition, overall themes from studies that included the first-person accounts of individuals with disabilities will be included. Studies that were conducted outside of the United States were excluded, unless they referenced United States criteria as being used to define learning disabilities in their research, as many countries do not define learning disabilities by the definition included in IDEA. Many researchers from outside of the United States do not include a definition of how the individuals who participated in their studies were diagnosed, making it
11 challenging to determine if the study and its findings apply to the same population of students that are considered to have learning disabilities in the United States.
Social Factors Influencing Students with Learning Disabilities
One factor that influences students’ educational experiences is peer relationships and social experiences. Some students with learning disabilities experience social difficulties, especially students with nonverbal learning disabilities (Elias, 2004; Elksnin & Elksnin, 2004).
It is estimated that as many as 75% of students with learning disabilities have social skill deficits to some degree with 25% receiving intervention for associated difficulties (Elksnin & Elksnin,
2004). However, some teachers may not be as concerned about the social experiences of their students due to emphasis and pressure around academic achievement and because social difficulties are not a distinctive feature of the learning disability diagnosis (Bryan, Burnstein, &
Ergul, 2004). Many of the social challenges these students face are not exclusive to individuals with learning disabilities; school personnel may not feel additional attention toward the social behaviors of students with learning disabilities is necessary (Bryan et al., 2004; Cartledge, 2005).
However, researchers have been interested in the non-academic characteristics of students with learning disabilities, including social characteristics, for over forty years and have found that many students with learning disabilities experience social struggles that can influence their academic success (Elksnin & Elksnin, 2004).
Social skills are necessary for success inside and outside of school (Cartledge, 2005;
Elksnin & Elksnin, 2004). Students with learning disabilities may lack social skills or experience delays in the development of social competencies as a byproduct of their disability or in addition to their disability (Bryan et al., 2004; Estell et al., 2008; Meadan & Halle, 2004).
Challenges with selection of conversation topics, taking turns in conversation, remaining on
12 topic, and telling an organized story could all stem from poor language skills (Bryan et al., 2004;
Cartledge, 2005; Elksnin & Elksnin, 2004). Additionally, some students with learning disabilities may have difficulty recognizing emotions in the facial expressions of peers or naming the feelings of others due to less sophisticated emotional vocabularies and/or weaker social skills
(Bloom & Heath, 2010; Elias, 2004; Elksnin & Elksnin, 2004). Individuals with learning disabilities may struggle with nuanced social skills as well, including interpreting nonverbal cues, identifying humor, delivering comments tactfully, comprehending social motivations, and taking on different perspectives (Cartledge, 2005; Elias, 2004). Children without these skills are more likely to experience poor social experiences while in school and social difficulties that continue after graduation.
Some individuals with learning disabilities may have difficulties establishing social relationships (Bryan, 1974; Bryan, 1976; Elias, 2004; Estell et al., 2008). Some studies have shown higher levels of isolation, less interaction with peers, and lower levels of engagement in classroom discussion and activities for students with learning disabilities (e.g., McIntosh,
Vaughn, Schumm, Haager, & Lee, 1993). Other researchers have found that students with learning disabilities are as likely to belong to social groups as their peers without disabilities
(Estelle et al., 2008; Meadan & Halle, 2004). However, some researchers have found that students with learning disabilities belong to social groups of lower social status than the peer groups of students without disabilities (Estell et al., 2008; Nowicki, 2003). This could be related to students with learning disabilities being seen by their peers as less desirable potential friends; they may be less likely to be socially accepted and more likely to be socially rejected by classmates (Bryan, 1974; Bryan, 1976; Elias, 2004; Estell et al., 2008; Meadan & Halle, 2004;
Nowicki, 2003; Wiener, 2004). While students with learning disabilities often have as many
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friends as their peers without disabilities, they may be engaged in less satisfying relationships in
terms of feelings of closeness and amount of time spent together or relationships that are less
reciprocated (Martínez, 2006; Wiener, 2004).
Self-advocacy and assertiveness skills have been highlighted as social skills necessary for
the success of individuals with learning disabilities (Milsom & Glanville, 2010; Reiff, 2004;
Rosetti & Henderson, 2013). Many students with learning disabilities rely on their parents to
advocate on their behalf, especially at a young age, which can prevent them from developing the
skills they will need to advocate for themselves and communicate effectively about their disabilities in the future (Milsom & Glanville, 2010). Also, while teacher support is necessary for the success of all students, students with learning disabilities who are viewed as reliant on adult support are more likely to be seen as less independent and be bullied by peers (Rose,
Espelage, Monda-Amaya, Shogren, & Aragon, 2015). Individuals with learning disabilities have emphasized the importance of self-advocacy and described the relationship between self-
advocacy skills and their own self-confidence and success (Rosetti & Henderson, 2013).
Though much of the literature portrays the social skills and experiences of individuals with learning disabilities as lacking compared to peers without disabilities, some individuals with learning disabilities experience no social skill deficits and positive social lives that are very similar to their peers without disabilities (Cartledge, 2005). The social self-concept of individuals with learning disabilities varies greatly depending on personal characteristics and contextual factors (Bryan et al., 2004). Similar to children without disabilities, participation in extracurricular activities can also influence who children with learning disabilities interact with and develop friendships (Rose et al., 2015). Developing relationships with peers and experiencing peer support may promote enjoyment of school, positive self-esteem, and academic
14 and personal success for individuals with learning disabilities (LaBarbera, 2008; Milsom &
Glanville, 2010; Rosetti & Henderson, 2013).
Social outcomes may be more positive for students with learning disabilities who participate in the most inclusive settings and experience positive learning environments (Gans,
Kenny, & Ghany, 2003; LaBarbera, 2008; Wiener, 2004; Wiener & Tardif, 2004). These students may experience higher levels of peer acceptance, more satisfying relationships, and may be less lonely compared to students with learning disabilities who spend part of their school day in more restrictive environments (Wiener & Tardif, 2004). However, classroom placement is often determined based on prior academic performance and additional factors as the overall impact of a learning disability can vary in severity. Decisions on the level of inclusivity that is most productive for students with learning disabilities may be best determined on a case-by-case basis.
Potential Emotional and Mental Health Challenges
A second factor that may influence the educational experience of individuals with learning disabilities is the potential for emotional or mental health challenges. Individuals with learning disabilities may be more likely to experience negative emotions or mental health issues such as depression, loneliness, and anxiety than people without disabilities (Bryan et al., 2004;
Mammarella et al., 2016; Morrison & Cosden, 1997). Some students with learning disabilities do not process emotional information or manage emotions as well as their peers without disabilities, which can lead to further challenges (Hen & Goroshit, 2014). In addition, some individuals with learning disabilities experience more negative moods and greater feelings of hopelessness than those without disabilities (Lackaye, Margalit, Ziv, & Ziman, 2006). Feelings of hopelessness focused around perceived academic achievement and potential for success can
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become a barrier for these students (Lackaye et al., 2006). Though students with learning
disabilities may be more susceptible to feelings of loneliness or helplessness than their peers,
many students with learning disabilities do not experience these significant emotional challenges
(Morrison & Cosden, 1997; Noble, 2017).
In addition to the increased potential for students with learning disabilities to experience
persistent negative emotions, they may be more likely to develop mental health issues, such as
anxiety or depression, than their peers without disabilities (Mammarella et al., 2016; Morrison &
Cosden, 1997; Nelson & Harwood, 2011; Noble, 2017). There are multiple theories about the
relationship between learning disabilities and mental health issues. Some researchers believe
anxiety develops because of lowered self-esteem or frustration caused by the academic difficulties individuals with learning disabilities often face (Morrison & Cosden, 1997; Nelson &
Harwood, 2011). Others believe that people with learning disabilities are at a higher risk because of their neurological differences (Morrison & Cosden, 1997). The likelihood of developing mental health issues could also be influenced by social challenges or environmental factors (Heath & Wiener, 1996; Mammarella et al, 2016; Morrison & Cosden, 1997). Many of the environmental factors that increase the likelihood of emotional or mental health issues for students with learning disabilities are the same as for students without learning disabilities; however, these factors may be intensified by disability (Morrison & Cosden, 1997).
Sometimes, the emotional and mental health needs of students with learning disabilities can go unnoticed by teachers (Mammarella et al., 2016). In-service training does not always include that these students may be at a higher risk for emotional or mental health challenges than their peers (Mammarella et al., 2016). While teachers should not be expected to support significant emotional or mental health needs of their students, some researchers believe they
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should receive training on minimizing anxiety in the classroom as anxiety can further exacerbate
academic difficulties (Nelson & Harwood, 2011). Though students with and without learning
disabilities may experience anxiety, many individuals with learning disabilities do not experience
any significant mental health issues.
Identity Development of Individuals with Learning Disabilities
Self-concept of individuals with learning disabilities. Much of the literature on
individuals with learning disabilities has been focused on comparing identity-related characteristics (e.g., self-perception, self-concept) of individuals with learning disabilities to their peers without disabilities. Self-perception of learning disability may affect self-concept, which likely influences achievement (Heyman, 1990). Researchers have speculated that self- perceptions can create self-fulfilling prophecies for students; those who believe they can be successful will be and those who believe they cannot be successful will not (Heyman, 1990;
Wegner, 2017). However, there are contradictions about self-concept of individuals with learning disabilities throughout the literature (Heath & Wiener, 1996), suggesting that individual experiences can greatly vary.
Academically, some individuals with learning disabilities may struggle to see themselves positively, especially when facing academic challenges or initially after being diagnosed (Gans et al., 2003; Rodis, Garrod, & Boscardin, 2001). Individuals with learning disabilities may experience lower self-concept related to academics than their peers without disabilities (Bryan et al., 2004; Chapman, 1998; Gans et al., 2003; Grolnick & Ryan, 1990; Lackaye et al., 2006). In addition, individuals who experience social, emotional, or mental health challenges may be more likely to have lower general self-concept than students who do not (Heath & Wiener, 1996).
Feelings of lower academic self-concept could be related to the academic challenges caused by
17 learning disabilities, making students feel less academically competent than their peers (Gans et al., 2003). Some researchers have found that students with learning disabilities report lower levels of academic self-concept even when they academically perform and earn grades similar to their peers without disabilities (Lackaye et al., 2006). However, numerous studies have found that there is no difference in general self-concept of individuals with learning disabilities when compared to their peers without disabilities (Chapman, 1998; Gans et al., 2003; Grolnick &
Ryan, 1990). Individuals with learning disabilities who recognize strengths as more important than weaknesses caused by disability may be more likely to have positive self-concepts
(Chapman, 1998; Gans et al., 2003; Rothman & Cosden, 1995).
Acceptance of disability. As all individuals with learning disabilities are different, they do not all view their disabilities the same way (Rothman & Cosden, 1995). Successful adults with learning disabilities usually have some level of acceptance of their disabilities (Reiff, 2004).
Individuals who have less negative perceptions of their learning disabilities may have more positive self-concept and higher academic achievement (Reiff, 2004; Rothman & Cosden, 1995).
Some individuals with learning disabilities accept their differences from peers, but do not consider themselves to have a disability due to assumptions and stigmas that are often associated with the label (Connor, 2007; Rodis et al., 2001). The way individuals with learning disabilities view their disabilities can be shaped by how their parents communicate about it and how significantly it impacts the person’s life (Reiff, 2004; Rothman & Cosden, 1995). Overall, acceptance or rejection of disability status seems to be a personal experience that varies for every individual.
Acceptance of learning disability status is often accompanied by greater understanding of the disability by the individual (Higgins, Raskind, Goldberg, & Herman, 2002). Understanding
18 of one’s disability has been shown to help students with learning disabilities set goals and plan for academic and personal success (Reiff, 2004; Wegner, 2017). Self-awareness may be a predictor of success for individuals with learning disabilities (Reiff, 2004); knowing personal strengths and weaknesses can be used to prepare for challenges and follow through with personal goals (Gerber et al., 1996; Wegner, 2017). Understanding of disability can help individuals with learning disabilities to recognize the impact their disability has on learning and life experiences, set practical goals, and promote positive self-concept (Reiff, 2004).
First-Person Accounts of Learning Disability Experience
Though there has been a call for research that prioritizes the first-person accounts of individuals with learning disabilities, the literature in this area is limited. However, the existing literature provides great insight into how students with learning disabilities perceive their educational experiences and skills necessary for the success of students with learning disabilities.
The majority of studies that exist that include the perspectives of individuals with learning disabilities involve in-depth interviews looking to gain insight into certain aspects of the participants’ experiences (see Table 1). These types of studies are beneficial for the insider perspective they bring to the field on this topic of educational experiences. However, only a few researchers have asked individuals with learning disabilities to comment on all aspects of their educational experiences to present a holistic view of the participants’ experiences.
Table 1
Summary of Previous First-Person Literature from Individuals with Learning Disabilities
Study Information Author(s) Date Topic of Study Participant(s) Method Connor 2007 Intersection of learning 1 “young adult” Narrative interview data disability, race, and class male with a arranged in poetic form in educational experiences learning disability
19
Goldberg, 2003 Insider insight into 41 adults with In-depth interviews Higgins, previously identified learning analyzed with Raskind, variables that predict disabilities who ethnographic approach & Herman successful outcomes for previously adults with learning participated in disabilities longitudinal study
Higgins, 2002 Insider perspective into 41 adults with In-depth interviews Raskind, the process and potential learning analyzed with Goldberg, importance of accepting a disabilities who ethnographic approach & Herman learning disability previously participated in longitudinal study
Reid & 1995 What it meant to the 13-year old female Individual interview with Button participants to be labeled with learning primary participant; with learning disability; disabilities; 5 other Collaborative essay with What teachers needed to 6-7 grade students all participants know to better understand with learning students with learning disabilities disabilities and their experiences
Rodis, 2001 Personal stories about life 13 adults with Book containing Garrod, & with a learning disability; learning autobiographical essays Boscardin Topics chosen by disabilities and/or individual ADHD
Rosetti & 2013 The lived experiences of 4 adolescents with Individual interviews Henderson adolescents with learning learning disabilities related to peer disabilities aged support, self-advocacy, 14-18 and self-acceptance of learning disability
Wegner 2017 Student perceptions of 7 college freshmen Interviews with each skills and attitudes that with learning participant analyzed with help them be academically disabilities grounded theory successful approach; Follow-up interviews with 2 participants
The previous literature from the perspectives of individuals with learning disabilities includes discussion on the skills and characteristics of individuals with learning disabilities who
20 are successful in school and adult life. Frequently highlighted are personal attributes such as proactivity, maturity, and perseverance as being necessary for personal and academic success
(Goldberg et al., 2003; Rosetti & Henderson, 2013; Wegner, 2017). The importance of self- awareness, self-advocacy skills, appropriate goal setting, and self-acceptance are also present in the literature (Goldberg et al., 2003; Rosetti & Henderson, 2013).
In addition to personal characteristics, individuals with learning disabilities have discussed the role support systems play in positive experiences (Rodis et al., 2001; Rosetti &
Henderson, 2013). Peer support, encouragement from family, and teacher understanding all seem to play a role in the success of students with learning disabilities (Goldberg et al., 2003;
Rodis et al., 2001; Rosetti & Henderson, 2013). Individuals with learning disabilities have especially noted the role their parents have played in supporting them both personally and academically (Goldberg et al., 2003). Many have also discussed the roles teachers played in their experiences. Often, teachers are described as generally caring and understanding of learning disabilities and individuals with learning disabilities have emphasized appreciation for when they were treated with the same respect as their peers without disabilities (Reid & Button,
1995). Though support from family, peers, and teachers have the potential to create positive learning environments, other factors also influence the educational experiences of individuals with learning disabilities.
When describing their experiences in school, students with learning disabilities have highlighted a number of challenges they experienced. They have described having to work harder than other students because of their disability and indicated that having a disability created stress in their lives (Connor, 2007; Goldberg et al., 2003; Rodis et al., 2001). Feelings of being different from other students and fear of being “stupid” have been discussed as aspects of
21 the learning disability experience that many children with learning disabilities face (Connor,
2007; Higgins et al., 2002; Rodis, et al., 2001; Rosetti & Henderson, 2013). These feelings have contributed to some of the social challenges individuals with learning disabilities may experience. First-person accounts have included being labeled as a social reject, hiding disability status from peers and friends, feeling misunderstood by peers because of stigma surrounding disability, and other social difficulties (Connor, 2007; Goldberg et al., 2003; Higgins et al., 2002;
Reid & Button, 1995; Rodis et al., 2001). While individual experiences vary, all literature on the experiences of individuals with learning disabilities includes some challenge associated with disability. Though challenge related to disability is prevalent through the literature, these challenges are often framed as experiences that individuals with learning disabilities can work around or overcome.
Acceptance of disability is a strong theme among the first-person literature of the experiences of individuals with learning disabilities. Many individuals have described how their learning disabilities had less of an impact on their learning and experience as they grew older; some felt more confident, more relaxed, and less stressed because of their disability as they learned more about themselves and their disabilities (Goldberg et al., Rodis et al., 2001; Rosetti
& Henderson, 2013). For some people with learning disabilities, understanding how their disability impacted them personally helped them become better students and set realistic and fulfilling life goals (Goldberg et al., 2003; Higgins et al., 2002; Rodis et al., 2001). Further, some have described how they view their disabilities as a positive aspect of their lives, appreciating the roles they had in the people they became (Higgins et al., 2002; Rodis et al.,
2001).
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While there are first-person accounts of learning disability experience in the literature, as
well as larger studies that have investigated components of the experiences of individuals with
learning disabilities as a population, more research is needed on the educational experiences of
individuals with learning disabilities and the factors that impact their experiences. Much of the
existing data on the experiences of students with learning disabilities only covers certain aspects
of the participants’ experiences (see Table 1) and the majority of research on the factors
influencing their educational experiences is not recent. It is possible that the experiences of
individuals with learning disabilities have changed over time as educational practices and climate
have progressed (e.g., ESSA, 2015; IDEA, 2004). In addition, as identification policies have
changed, the population of students with learning disabilities is also different (Gresham &
Vellutino, 2010). More research is needed from the perspectives of young individuals with learning disabilities that includes in-depth insight from an insider’s perspective into how the variety of factors that impact academic success are influenced by disability. Research that explores the applicability of past findings to the modern generation of individuals with learning
disabilities and expands understanding of learning disability experience is needed to continue to
support these individuals.
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Method
The purposes of this study were to better understand the educational experiences of individuals with learning disabilities in the K-12 setting, give voice to their perspectives, and inform practice through the use of a narrative methodology. Qualitative inquiry allows us to use research to hear the voices of those who are often silenced; qualitative methods are flexible enough to be adapted to study phenomena such as personal experience (Liamputtong, 2006).
Clandinin and Connelly (2000) define narrative and describe its function as a methodology by saying, “Narrative inquiry is aimed at understanding and making meaning of experience. … Why use narrative inquiry? Because narrative inquiry is a way, the best way we believe, to think about experience” (p. 80). As the primary focus of the study was to better understand the educational experiences of individuals who were identified as having learning disabilities, narrative was the approach most suitable to answer the research questions (Clandinin &
Connelly, 2000; Creswell, 2013; Creswell, 2015).
There are multiple types of narrative available for use by qualitative researchers. The
most appropriate narrative approach for the topic of this study was an oral history narrative
because of the emphasis it places on the stories of the individuals of focus (Creswell, 2013;
Ritchie, 2014). Oral history narratives involve gathering personal stories from one or more
individuals with a focus on some specific context (Creswell, 2013). Oral history narrative can
also be used as a method for gaining deeper knowledge on a particular experience (Lieblich,
Tuval-Mashiach, & Zilber, 1998). For this study, the context was K-12 educational experiences of individuals with learning disabilities, including experiences at school and home that related to the learning of academic content. This approach differs from other narrative approaches because
24 the researcher is not a subject of the research and the stories of experience focus on a specific context instead of the subject’s entire life (Creswell, 2013).
Research Procedures
Recruiting and participants. Participants for the study were students with learning disabilities enrolled at the University of Cincinnati who had disclosed their diagnoses with the
Disability Services Office (DSO). These participants were purposively selected for their ability to reflect over their experiences in K-12 education (Brantlinger, Jimenez, Klingner, Pugach, &
Richardson, 2005; Patton, 2002) as well as for their convenience as members of the university community. Students still enrolled in K-12 may not have had time away from their schooling experiences in which to reflect and may feel uneasy offering criticism around the policies and decisions of their schools while still enrolled. Contrarily, individuals beyond college years may have had too much distance from their K-12 experience, leaving them unable to share specific examples to illustrate their experiences. College-age students are also generally similar in age and likely experienced the same educational climate and trends as one another. In addition, college students with learning disabilities are examples of students who were successful during their K-12 schooling and able to offer insight into aspects of their educational experiences that supported their success.
Approval from the Institutional Review Board (IRB) was obtained prior to recruiting for the study. The proposal was given a “non-human subjects” determination from the IRB due to its lack of generalizability. Recruiting was done through the DSO at the University of
Cincinnati. The researcher contacted the director of DSO about the project and the director agreed to send an email out to the registered students upon reviewing the approved proposal from the IRB and a brief summary of the study. An email was sent to the 896 undergraduate and
25 graduate students registered with DSO at the university containing a description of the study and the contact information of the researcher for students to follow up if interested (see Appendix A).
A total of 37 students contacted the researcher about participation in the study. These individuals were then given the full IRB proposal and a more comprehensive description of the study to review (see Appendix B) and asked to follow up again if they were still interested in the study. All participants who followed up the second time as still being interested were included in the study if they met inclusionary criteria. Inclusionary criteria for the study included: 1) The individual must have a diagnosed learning disability; 2) The participant must have been diagnosed while in the K-12 setting; and 3) The individual must be willing to openly discuss their disability with the researcher. Those who were still interested, but were excluded, did not have a learning disability as defined by the study, were diagnosed after completion of high school, or responded after data collection was complete. There was no preference placed on the type of school students had previously attended (e.g., public, private, etc.) or whether or not the students were placed in general or special education. No discrimination was placed based on gender, race, class, university status, or any other factor.
Seven participants were interviewed for the study. All students were undergraduates ranging from first to fourth year, from a variety of colleges and majors. All seven participants were originally from Ohio. After determining their interest in participating in the study through the second follow up email, each participant met in person with the researcher to discuss the IRB proposal and the study as a whole. During this meeting, the researcher reviewed the purpose of the project, general procedures, and scheduled the first interview (Ritchie, 2014; Rubin & Rubin,
2005; Seidman, 2006). Participants were asked to sign the consent form (see Appendix B) prior to the first interview to allow time for each individual to review the document privately and
26
determine if they wanted to participate (Seidman, 2006). Participants were informed that they
could withdraw from the study at any time and their data would not be considered for the study
(Rubin & Rubin, 2005). At the start of the first interview, each participant gave informed,
written consent, if the form had not already been returned to the researcher prior to the interview,
and completed a general demographic sheet (see Appendix C). The researcher asked each
participant if they were comfortable with audio and video recording and reminded them not to
answer any questions with which they were uncomfortable and to ask clarifying or follow up
questions at any point throughout each interview. Following completion of the interview stage,
two participants were excluded from the study. Both participants had other diagnoses in addition
to learning disabilities that, based on the interviews, impacted their lives and experiences more
substantially than their learning disabilities.
Ella. Ella was a twenty year old, Caucasian, female studying Psychology. She was in her sophomore year at the beginning of the study. In second and third grade, Ella began to fall behind her classmates in reading. Her mother, a preschool special education teacher, recognized
Ella was struggling more than she should have been in class and with homework, suspected dyslexia, and had her evaluated outside of school. In fourth grade, she was officially diagnosed with dyslexia and received accommodations under a 504 Plan. In addition to accommodations in school, Ella received tutoring in the Orton-Gillingham approach, a structured teaching approach that uses the connections between sounds and letters to teach reading and spelling (see
“Academy of Orton-Gillingham,” 2018), for reading outside of school.
Gwen. Gwen was a nineteen year old, Caucasian, female student studying Biology. She was a freshman at the start of the study. Her parents initiated the diagnosis process after their suspicions were shared with Gwen’s kindergarten teacher when she was not learning to read as
27 quickly as other children, even with additional support. In second grade, Gwen was diagnosed with dyslexia and received special education services with an IEP. Later, multiple cases of dyslexia were diagnosed within her family. After her diagnosis, she also received Orton-
Gillingham tutoring outside of school.
Jess. Jess was a nineteen year old, Caucasian, female studying Operations Management.
She was in her freshman year during the beginning of the study. During the start of her senior year of high school, Jess had a concussion following an accident. She fell down a flight of stairs, hitting her head an undeterminable number of times. Following the injury, Jess was monitored by her team of doctors for several months to track her progress. When she did not recover from the concussion as predicted, she was evaluated to determine if the injury caused long-term damage to her memory, processing, and other functional skills. Following testing, it was determined that her ability to perform in these areas was substantially below others her age and where she would have scored prior to the diagnosis. She was then diagnosed with a post- concussion learning disability.
Nick. Nick was a twenty year old, Caucasian, male studying Information Technology.
He was in his sophomore year at the start of the study, however, he was in his first year in
Information Technology after switching from an engineering program. As a young child, his parents noticed that he struggled to walk more than his older brother had at the same age and consulted with their pediatrician. After working with the pediatrician and a psychologist, Nick was diagnosed with a non-verbal learning disability at age eight due to his exceptional ability to comprehend verbal language and challenges with other forms of information. In addition to receiving special education services under an IEP for his learning disability, he also received occupational therapy for motor and coordination challenges that persisted.
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Reid. Reid was a twenty-one year old, Caucasian, male studying Industrial Design. He
was a third-year student at the start of the study. He was diagnosed with a reading learning
disability in second grade following his first grade teacher’s suspicion that he had a learning disability because of the cognitive work required for him to decode written symbols while learning to read. His teacher recommended to Reid’s parents that they initiate the diagnosis process based on her prior experience as the parent of a child with a disability. Reid was never diagnosed with a specific learning disability subtype, but explained that it affects his ability to
“make meaning of the words on the page.” He was also diagnosed with a decoding learning disability and wore glasses to refocus his eyes while reading during his elementary years. Reid was the only participant not to attend public school. He initially attended a private, Catholic elementary school. After his diagnosis, he attended a private school for students with learning disabilities through eighth grade and then transitioned to a private, Catholic high school where he accessed special education services under an IEP.
Setting. All interviews occurred on campus at the University of Cincinnati. Participants were asked prior to interviews about their preferences for a meeting space to allow for more or less noise and distractions depending on each participant’s ideal conversation space. Each interview occurred in a space with a closed door (e.g., office space, library study room, etc.) that kept the questions and responses private as to not draw attention to the conversation or the participants’ diagnoses. Data collection continued past the semester for many students. Those who were no longer located on or near campus continued interviews through video chat using
Skype (see Table 2). For video chat interviews, the researcher was located in a quiet, closed- door space to allow for the same privacy as an in-person meeting.
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Table 2
Types of Interview Each Week by Participant
Interview Number Participant 1 2 3 4 5 6 7 8 9 10
Ella P P P P P P P P P P Gwen P P P P V V V V V V Jess P P P P N P P P P P
Nick P P P P P P P P P P Reid P P P V V V V V V V Note. P=in-person interview, V=video chat interview, N=no interview conducted
Interview procedures. The researcher met with each participant weekly for ten,
individual interviews lasting approximately one hour each. The purpose of each interview was
to better understand the participants’ experiences and the meanings they made of their
educational experiences (Seidman, 2006). Interviews were conducted weekly to establish a
relationship that allowed for rapport to be built over time so participants would feel comfortable
sharing about their personal experiences with the researcher (Clandinin & Connelly, 2000;
Ritchie, 2014). The space between interviews not only allowed the researcher to reflect on the previous interview, but also allowed each participant time to process and reflect on memories related to the topic without too much time between interviews that the connection-building
between topics was interrupted (Seidman, 2006). There were a few scheduling exceptions; the
researcher met with Nick twice per week because he was leaving shortly after the end of the
semester. Other participants sporadically took breaks longer than a week between each interview
to accommodate schedule changes such as taking finals, work responsibilities, and moving off-
campus.
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The first interview began with the researcher asking whether or not the participant felt
comfortable with her or his diagnosis being described as a disability and whether or not she or he
felt comfortable being described as a person with a disability. The researcher gave an overview
of the format of the interviews emphasizing the focus on the participant sharing what he or she
was comfortable sharing with the option of choosing not to answer (Rubin & Rubin, 2005). The
researcher also discussed with each participant the preference for her or him to say whatever they
were thinking with no concern for a “right” answer or saying what they researcher “wanted” to
hear. Participants were also encouraged to share stories, details, and connected thoughts
whenever possible (Seidman, 2006). Following the conclusion of each interview, participants
were reminded that they were welcome to add additional information to the interview at any
time. The researcher offered the option of scheduling additional meetings if the participant felt it
necessary or the option to supplement the interview by emailing post-interview thoughts. One of
the participants added to the oral interview by emailing the researcher after one interview to add
thoughts that occurred after the meeting.
In narrative inquiry, interviews often become more similar to conversations due to the relationship formed between researcher and participant (Clandinin & Connelly, 2000). The
researcher made attempts to create a casual environment where the participants did not feel
intimidated or judged by the researcher. This helped to shift the inequality often found with
interviews where the researcher is in a position of power by creating all questions and directing
the flow of conversation. Throughout all interviews, the researcher made efforts to remain as
unbiased as possible, using body language such as smiling and nodding to demonstrate interest
and encourage participants to speak freely about their experiences (Clandinin & Connelly, 2000;
Ritchie, 2014). However, the researcher did refer to a predetermined list of interview questions
31
(see Appendix D) to keep the participant from becoming too tangential in their storytelling and to keep the researcher focused on the primary subject of each interview.
To seem as unbiased as possible and to allow each participant to share her or his personal perspective, the researcher was careful to “suppress or play down personal beliefs” (p. 72) as to not influence how the participant told her or his story (Hammersley & Atkinson, 2007). The researcher offered enough personal detail to initiate a friendly relationship where the participant felt comfortable to share and adequate professional detail to demonstrate qualifications for conducting the study, but held back personal beliefs to reduce interviewer bias (Clandinin &
Connelly, 2000; Hammersley & Atkinson, 2007, Rubin & Rubin, 2005; Seidman, 2006).
Data Collection
One of the most common formats for narrative data collection is oral history interviews
(Clandinin & Connelly, 2000). These interviews often contain stories connected to the experience of interest that can be used autobiographically. Oral history narratives involve the telling of stories that happened in the past. Participants will often switch between discussion of events that occurred in the past, how they connect to the present, and their implications for the future when retelling stories connected to the phenomenon of interest (Clandinin & Connelly,
2000). Semi-structured interviews were used as the primary data collection method. The interviews were designed to focus on a different general topic each week (see Table 3) with a mix of specific and broad questions that left opportunities for participants to incorporate stories into each response. Participants were given the general topic a week in advance to allow time for them to think about their experiences with respect to the topic. The researcher predetermined the weekly topics with the option of adding additional questions and interview sessions (Rubin &
Rubin, 2005). However, it was determined that after ten, hour-long interviews, the level of
32
saturation had been reached and no additional interviews were necessary (Creswell, 2015;
Seidman, 2006).
Table 3
Weekly Interview Topics
Week Topic 1 General Information and Getting to Know You 2 Diagnosis/Understanding of Disability 3 Special Education Services and Accommodations and General Educational Experience 4 Social Implications and Experiences 5 Individualized Education Program/504 Plan Meetings 6 Identity as Someone with a Disability 7 Stigma of Disability 8 Potential Recommendations for Practice 9 Going Forward as Someone with a Disability 10 Final Questions and Wrap Up
The interviews were audio and video recorded for later analysis. Video recordings were
used to keep record of any informative body language that would not be captured by audio alone,
adding an additional dimension to the interview (Ritchie, 2014). This included facial
expressions, eye contact, and shifts in comfort levels as evident by body language. Video
recording allowed the researcher to remain present during the interviewer without the distraction
of taking field notes.
Data was also collected in the form of significant documents as relevant (Creswell,
2013). Each participant was encouraged to share information from relevant documents (e.g., past psychological reports, IEPs, 504 Plans, etc.) if they felt they were important to their stories.
No participants shared formal documentation with the researcher, but often reviewed their past paperwork prior to interviews to share information with the researcher. All participants often mentioned checking in with parents during the data collection period. During interviews, each participant referred to questions they had asked their parents to clarify events that had occurred
33
when they were younger, to access additional records, or to determine their parents’ thinking
during different situations as a way to prepare for certain interview topics.
Interview questions. Interview questions were derived from common themes seen in previous research, as discussed in the literature review of this study, while allowing space for each participant to offer their reflections, thoughts, and ideas on each topic, making their experiences the backbone of the interviews (Ritchie, 2014). The researcher reviewed the literature related to factors that may influence the educational experiences of individuals with learning disabilities (e.g., social factors, emotional and mental health challenges, identity development, etc.) to expand on previous findings through more personal stories and in-depth questions (Creswell, 2015). Questions were reviewed by a colleague outside of the project to ensure the questions were appropriate, only including personal questions that were necessary or applicable for the study. The interviews were also checked for general flow and clarity of wording (Brantlinger et al., 2005); avoiding large transitions in topic and working to incorporate a cycle of potentially personal or challenging questions mixed with more straightforward questions. A combination of broad and specific questions were used to gain both general memories from the participants as well as to elicit details the participants may not have independently thought to include (Ritchie, 2014). Each interview also included questions intended to have the participants reflect on how aspects of their experience may have impacted their journey to their present lives, allowing them to take part in making meaning of their stories
(Seidman, 2006). During interviews, the researcher did not always follow the predetermined order of questions; questions were frequently rearranged to best fit the natural flow of conversation within the interview and supplemented with follow-up questions when necessary
(Ritchie, 2014).
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Creation of the questions was somewhat iterative. Conversations with participants often sparked additional questions that would be incorporated into interviews with other participants or added to the final interview to ensure all participants were asked as many relevant questions as possible (for a complete list of formal interview questions, see Appendix D) (Rubin & Rubin,
2005; Seidman, 2006). Each participant answered the same questions with one main exception:
Interview 5 focused on the experience of the annual accommodations and services meeting. This interview was not conducted with Jess; since her diagnosis occurred during her senior year of high school, a formal program was never developed for her. Instead, her school worked closely with her parents and doctor to determine accommodations to help her be as successful as possible for the remainder of the school year.
Data Analysis
Phase one. To begin data analysis, the researcher listened to each interview while completing open-ended, analytic memoing following each interview (Miles, Huberman, &
Saldaña, 2013; Rubin & Rubin, 2005; Saldaña, 2015). The iterative process of collecting data and initial data analysis through memoing gave the researcher opportunities to ask for elaboration or clarification on previously discussed topics. Analytic memoing was utilized throughout all stages of data collection and analysis to organize and track potential connections between data (Miles et al., 2013; Rubin & Rubin, 2005; Saldaña, 2015). The memos were focused from numerous angles, including: how the research related to the data, potential coding choices, emerging patterns in categories or concepts between and within participants, emerging theories about the data, and future directions for the study (Saldaña, 2015). The researcher transcribed each interview in its entirety to avoid premature judgment of what pieces were
35 important (Creswell, 2015; Seidman, 2006). Transcription began during data collection and continued following the completion of the interviews.
Phase two. The second portion of data analysis was restorying the participants’ narratives (Creswell, 2013; Creswell, 2015). Restorying involved reworking the data into a chronologically-organized narrative that incorporated the situational context of each participant’s shared stories (Clandinin & Connelly, 2001). The goal of each restoried narrative was to identify what the participants’ stories could contribute to deeper knowledge of the experience of being a student and an individual with a learning disability as well as to preserve the individual stories of each participant as no experiences are identical (Creswell, 2013; Creswell, 2015; Lieblich et al.,
1998). The researcher restoried each narrative to include aspects of how each participant composed her or his own story by including experiences that were more meaningful to the participant as well as commonalities and differences between participants (Gubrium & Holstein,
2009).
Each narrative was developed using direct quotes from the participant to form the story to present the data as first-person accounts. Direct quotes allowed the researcher to create restoried accounts that resembled the personality and voice of each participant by using “their own words to represent themselves” (Connor, 2007, p. 163), which is important as each narrative was a personal story (Creswell, 2015). The researcher added minimal language to the narratives when necessary to clarify context or readability. Changes to the participants’ quotes were marked using brackets around any additions.
Phase three. The third phase consisted of analysis focused on the development of themes, including qualitative coding of the data to identify categories that could be relevant to contexts outside of the participants’ individual experiences (Creswell, 2013; Creswell, 2015).
36
The researcher manually coded the transcripts using concept coding to create short phrases or
words that represented the larger meaning of a piece of data, suggesting a broader relevance
beyond the interview (Saldaña, 2015). In concept coding, codes refer to ideas represented by the
data rather than labeling behaviors or topics that occur in the data. Concept coding is applied to
larger units of data; portions of dialog were combined and labeled with concepts to progress data
analysis from individual lines of dialog toward the ideas suggested by the data (Saldaña, 2015).
This method was appropriate because the goal of the thematic portion of analysis was to develop
themes that combined the individual stories of each participant to be applied to broader contexts.
The researcher went through all transcripts to identify concept commonalities between
participants. Unique concepts that applied only to individual participants’ experiences were
included as well (Miles et al., 2013; Seidman, 2006). These concepts were then clustered into
redefined categories which combined comparable concepts into larger categories (Saldaña,
2015). From the larger categories, the researcher identified the themes that emerged from the
data to provide a more holistic interpretation of the data (Creswell, 2015; Miles et al., 2013;
Saldaña, 2015).
Validity
Multiple credibility measures were utilized to ensure validity of the study. Most prominent was the use of member checks at both the first and secondary levels (Brantlinger et al., 2005; Creswell, 2015). For the first level member check, participants were given full transcripts from their interviews with the options to review and confirm the accuracy of the dialog or propose changes (Brantlinger et al., 2005). There were no requested changes to the transcripts. For the second level member checks, the participants were each sent their restoried narrative and asked to suggest changes. The researcher worked with each participant until the
37 narratives were accurate and each participant was comfortable with the way her or his narrative was written (Creswell, 2015). Ella did not validate the narrative write up about her. The researcher contacted her via email multiple times, but received no response. The participants were also asked to review the thematic portion of the findings and the discussion of the study’s overall findings for validation of the researcher’s findings and conclusions (Brantlinger et al.,
2005). Member checking was essential to the study as the researcher was writing and representing the participants’ stories; it would be unethical to not allow the participants to review the writing with the option of making changes (Gubrium & Holstein, 2009; Rubin & Rubin,
2005).
In addition to member checking, prolonged field engagement, internal consistency checks, peer debriefing, and the inclusion of disconfirming evidence during analysis were used to ensure the validity of the study’s findings. The ten, hour-long meetings per participant allowed for prolonged field engagement where multiple, in-depth interviews were conducted
(Brantlinger et al., 2005). This length of time gave the researcher the opportunity to develop a relationship with each participant where internal consistency of the participant’s responses could be evaluated (Seidman, 2006). The prolonged engagement also allowed the researcher to gain an understanding of the time and context from which each participant was speaking and make sense of the data (Ritchie, 2014). Peer debriefs were conducted frequently to ensure the data were being accurately represented throughout the coding process and interpretation of the findings
(Brantlinger et al., 2005). And, data that disconfirmed the emerging themes were noted and considered during data analysis to ensure the findings were representative of the participants’ experiences (Brantlinger et al., 2005).
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Ethical Considerations
Standard ethical considerations were taken into account throughout each stage of the research process. Approval for the study was obtained from the IRB of the university. Informed consent by the participants was obtained prior to beginning the study. Only the researcher had access to the data and all data were immediately relabeled with pseudonyms to protect the identities of the participants. The names of family members, prior schools, and teachers were replaced with pseudonyms as well. Data were stored in two ways: paper copies were kept in a locked cabinet within a locked office and electronic copies were stored in a cloud-based data storage site that was password protected and required invitation. Participants received a gift card following completion of the study to thank them for their time and participation.
In addition, the researcher was cautious of each participant’s emotional health and well- being related to the study and only participated in conversations that were safe and appropriate for the participants as members of a vulnerable population as individuals with disabilities.
Rapport is necessary for a person to truly understand the perspectives of another (Liamputtong,
2006). This is especially important when interviewing participants of a vulnerable population about sensitive, personal topics; participants need to feel protected and comfortable with sharing their stories (Liamputtong, 2006; Rubin & Rubin, 2005). The researcher worked to build rapport through obtaining informed consent, showing respect, and valuing the stories and experiences of each participant (Seidman, 2006). In addition, the researcher also made efforts to set an informal tone for the interviews that allowed the participants to share freely in a conversational manner, reducing the power imbalance that is often present in interviews (Clanding & Connelly, 2001;
Liamputtong, 2006; Montgomery, 2013).
39
Findings
This section includes the findings from the two portions of data analysis: the restoried
narratives and the thematic analysis. First, the restoried narratives based on the interviews with
each individual participant are presented. These narratives focus on the educational experiences
of each participant and center around the uniqueness of each experience and perspective. The
narratives are composed of reordered direct quotes from each participant with clarifying
language that was added by the researcher included in brackets. Edits were made to the original
quotes to cut down on language that was redundant or did not contribute to the meaning of the
quote. Italics were used to indicate emphasis the participants put on certain words or phrases.
Ella’s Narrative
I'm such a complicated person. Getting to know me will be a fun roller coaster ride. I'm four foot 11; I'm dyslexic; and I love whales. Music has been a large part of my life. I play the clarinet. I was in marching band in high school and it was probably the best experience of my entire life. I was really in it for the social aspect and the competitiveness. I'm very competitive.
I can't play games with my family or friends because sometimes it gets violent. I'm not a super
emotional person, so sometimes it's a little hard to connect with my friends [who] are. And a lot
of the girls in my sorority are. Other than that, I'm really, really organized. In high school, my
locker was color coordinated and my planner was beautiful. I like to think that I'm really smart.
With the dyslexia it can be hard to study, but I really love school. I love learning. A lot of
people with learning disabilities don't like learning. It is a lot harder than [it is] for most people,
but I still love it. I don't know why; I guess I'm just weird like that.
Diagnosis process. I didn't really understand what was going on. In my head, I was
having difficulties in school, and all of a sudden, I was staying after school or staying in my
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teacher’s classroom to work during recess. And I didn't quite understand why at first. It started
happening in second grade when my mom noticed and said something to my teacher. There
really hasn't been a lot of research [or] knowledge of dyslexia until recently, so the school just
thought I was mentally slow. First, they were just like, “Let's put her in the special needs
classroom for a while and see if that helps.” Didn't help at all. And then they were like,
“Alright, well I guess she's fine, so we’ll put her back in the general classroom.” That's not what
I needed, obviously. I'm not doing well in my reading classes [and] I'm struggling with
homework. I [was] in tears doing homework assignments because I was so stressed. I was so
worried about having to go to school the next day. Having to read out loud to the class was
something that I was absolutely terrified of, and I'm still terrified of to this day. I understood
there was something going on: that I wasn't like other kids, I guess. But, from a second grader's
perspective, being pulled out [and] going into the special needs room, it did not make me feel
good at all. It made me feel singled out and that I was stupid because only certain kids need
[the] special needs classroom. Most kids have significant needs. I just need a little extra time
and help. But, they did not understand that at the time.
I remember in third grade, having this reading assignment, and I got an “F” on it. And, I remember coming home and crying because I didn't know what I did wrong. And I was like, I don't understand why this was so hard. [And then] I failed another assignment. And I was like, okay, I'm not stupid, but obviously something is not working. But then when my parents sat down and helped me redo the assignment, and I got an “A” on it because they took the time to fully explain what I was doing. I felt like the teacher didn't quite explain it in a way that made sense to me. And that's when it was really evident to my parents what was going on because it
41 was a reading assignment. But that moment will forever be engrained in my head, seeing [that]
“F” on a homework assignment.
I don't really know the whole process up until my diagnosis, but I know that for a while,
[the school] didn't want to have me tested. My mom knew that it was dyslexia, but they all just thought that I needed a little extra time to do things. They were just like, “No, she's fine. She'll get it eventually.” My mom was like, “If you're not gonna do it, I'm going to do it myself.” I remember having testing out of the classroom [and] fourth grade was when I was officially diagnosed. It was kind of a relief, honestly, to understand exactly what was going on with me because up until then I really had no idea. But once I finally got my diagnosis, it was kind of like, aha! We know what's going on and we can move forward in trying to get the accommodations and the help that I need to succeed. [Knowing] this is something that's actually a thing and other kids have it and it's not just you. It's actually a lot more common than people think. So actually having a name helped a lot.
And that's when the fight started for my 504. I didn't get my 504 until fifth grade because all the teachers were basically saying, “Yes, she has dyslexia, but she doesn't need the 504. She just needs extra time in the classroom to work on stuff. She doesn't need extra time on homework assignments or extra time on tests. And it took a while to get my 504. My mom said the reason I did not get an IEP was because I was not severe enough to qualify and the 504 was enough to help me.
I have a love-hate relationship with my disability. I did my own research on what it was
[and what] other kids experience once I was able to kind of wrap my brain around what was going on. Most [people] flip letters and numbers. They have a hard time with reading comprehension and stuff like that. Mine wasn't as severe as mixing numbers and letters. It does
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happen, but not as often. It mostly takes me longer to process language. [Most sources] hit more
on the common kind of dyslexia, which I don't have, so it was a little harder to figure out how it
related to me. And then I kind of started seeing how it was for me. And that's when I was like,
this is mine. This is me.
Tutoring. [At first,] I was going to this tutoring place that was just a homework-helper type of thing. It wasn't directed toward people with disabilities. [My parents] were trying to find a specific tutor or tutoring system that worked well for me and it took quite a few tries before they found one that actually worked. Once we found [Orton-Gillingham], a company that
actually specialized in dyslexia, that really helped a lot. I had six different tutors and I finally
found Sara, who was the one who tutored me one-on-one. And it completely changed my life.
I went to Sara for three years. She worked for Orton-Gillingham, but she also did home tutoring too. What she does is test you to see what needs you have and what you don't need to work on so that you're not working on things that you already understand. She's filling in the holes that you need to fill and every lesson builds on each other. We had a really good friendship, so that made tutoring more enjoyable. I didn't dread going. She always had fun games. I'm super competitive, so every time I had to beat myself with reading red words [(i.e., sight words)] and nonsense words to see how many cards I could read. I loved it. I’d have a ring of all my red cards, like this gigantic binder ring mostly the entire way full with just red cards.
Every time I got it right, I got a sticker on each one. Once I got five stickers on that card, I moved on to another one. At one point, [my sister and I] were both going to her, so then she had us pitted against each other because we’re both competitive. At the end of each session whoever had the most finished red cards won.
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And then I moved to the Orton-Gillingham Center because [Sara] teaches up until you
reach a certain level and then you have to go to Orton-Gillingham. So she's kind of the middle
man to get you to that point in order to get into Orton-Gillingham. And I was there for less than
a year because I'd been going to tutoring since fourth grade and I was just done. It was like I had chains on my feet. I dreaded it. I didn't want to go, mainly because I was like so tired of it.
[Tutors] are kind of hard to find and can be expensive, but it's something that really
helped me. The tutoring helped me get a lot of my confidence back because I understood my
disability and I was getting help that I needed. And I was noticing the things that I was learning
in tutoring in my classroom. I would hear a teacher say one of my red words and I would say,
“Oh, I gotta remember that for Sara later today.” But definitely making the connection between
tutoring and my school work helped me realize that I'm not stupid. I just needed a more
individualized experience.
Educational experiences. I love school, but it's always been a source of anxiety for me.
It was math and reading that I really struggled with. I mean, obviously it affects my reading, so I
hate reading. I avoid reading at all costs. I was really uncomfortable with my dyslexia in middle
school just because I didn't know what it was. But once I got to high school and was more
comfortable with myself and knew about my disability and my accommodations, I was a lot
more confident in my abilities. [My accommodations were] extra time on tests [and]
assignments, a list of assignments and when they're due at the beginning of the week so I could
plan, prioritize, and time manage, being able to use a calculator on all tests when I got to high
school, large print on tests and quizzes, and more white space too. I also started using graphing
paper in eighth grade because my mom realized that my math would start to drip down and I
would mix up what letter or number was supposed to be added to what other number.
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My mom read a lot to me. Every night before bed, she read a chapter from a book. If I'm
having a book read to me, it's perfectly fine. I understand every bit of it. But if I'm actually
looking at it, the words make my brain hurt. So after my diagnosis, [they] were like, “Let's give
you breaks.” Usually what I do if I have to read something is I'll read it in short 30 minute
intervals and walk away and then come back to it an hour later and read another 30 minutes.
That's what makes it so time consuming for me. I have to take breaks in between or I won't be
able to do it, period. Or I'll read the whole thing in a normal person amount of time, but I won't
comprehend any of it. [And] I can't just sit in class, hear what they're telling me, and know it. I
have to sit there and listen to what they're telling me, go home and read the chapter, and come
back and ask questions. I have to be a lot more proactive in my learning than other kids.
Feeling successful, feeling confident, definitely helps a kid want to learn. Doing [well] in
a certain subject or really enjoying a certain topic, it really fueled the fire in me. I loved science.
It was one of the things that I was just obsessed with. That was always my favorite thing in
elementary school. And then I know some kids that just hated school. If they could never go
back, they wouldn't. Some of my friends are just naturally good at school and they only want to
be here for four years. If school was naturally good for me, I would want to learn everything.
So it's kind of a struggle for me to see some of my friends just brush off education. I want school to be easy for me because I love it so much.
Every time that I really struggle with school [or] have some sort of shortcoming, part of me blames the dyslexia. I know I shouldn't blame it; I should use it as a tool to get me farther in life. But sometimes you can't help but blame. If I didn't do well on a homework assignment for reading, I can blame it on that instead of learning from the mistake. Things like that. You don't
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do as well as you thought on something, the first thing you brain goes to is what could I blame it
on? So that's usually the first thing I blame it on; I'm dyslexic.
Family support. My sister also has dyslexia. And my dad. He's never been diagnosed,
[but] we know what he has. He's much more severe. He was held back in third grade and they
just told his parents he was stupid. He went through his entire educational career from
kindergarten to graduating with his master’s thinking that he was just stupid. So he knows what
it feels like to go through it. Even though my dad struggled through it, he's very successful. I
guess [that] gave me more hope. Like in those moments when you're like, I'm the stupidest
person on the planet. No, you're not. Your brain is just wired differently and sometimes things
are a little bit harder, but that doesn't mean that you can't do it. Cause my dad did it. He's
severely dyslexic, and he's successful and he had no help. [So] just because I have [dyslexia]
doesn't mean I can't do anything I want. My parents pretty much drilled that into my sister’s and
my heads. They were kind of the “If you can dream it, you can do it” type-parents.
My mom was kind of like [an] umbrella over me to make sure that I was succeeding and
not letting any of the frustrations land on my shoulders. All of it landed on [my parents]. Their
only concern was that I was succeeding. Once I got my disability, my parents were a lot more
aware of what was going on, so they would approach me about homework or other assignments
differently, which really helped. Instead of being like, “Do your homework!” They were like,
“Do you need help with your homework?” They were a lot more helpful once they figured out
what was going on.
My parents felt it was important that I could advocate for myself since I'm shy around authority. I was always nervous about asking for help. I have anxiety toward people who have authority over me; I feel like I should just constantly say yes and do everything that they ask,
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[even] when I can't actually do that. And I have to tell my teacher or whoever about the things
that I need. [My parents] really wanted me and my sister to advocate for ourselves. And then if we had issues [or] there was something else that needed to be done, then they stepped in. And
I'm very thankful for my parents in that way; for keeping me out of the fight. My mom was a total mama bear, fighting for everything my sister or I ever needed.
Social experience. When I first was diagnosed, I didn't really want to broadcast it everywhere. It's not something everyone needs to know; just my close friends. If anything, it helped them understand me better. But other people, I didn't feel the need for them to know. If
I'm not really talking to you on a daily basis, you don't need that information. I didn't feel like it was necessary to put a tattoo on my forehead saying that I can't read. I mean, it shouldn't change the way you look at me. View me as a person, not as a person with a disability.
I have never had a friend who made me feel insecure or more aware of my disability. If
anything, they offered more help. I felt more support from them. If for some reason, I decided
to take a test outside of the classroom and some kid that I was friends with asked, I would have
been comfortable saying, “Yeah, I have a 504 for dyslexia.” I have no problem talking about it.
The only time I stood out that could have been handled better is when a teacher called me aside
after class. I was kind of a goody-goody in high school. I didn't get into any trouble, so any time
a teacher called me to stay after class, kids would be like “Ooh, you're in trouble.” And I'd say it
was for my 504. That's really the only times that I feel like maybe something different could
have been done. If anyone ever came up to me and was negative about my disability, I would
probably verbally fight them. So then they kind of realize that they said something stupid. [But]
I'm not socially awkward, so [my classmates] didn't really look at me any different than any
other student. They probably looked at me as the quiet girl who always did her work.
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Future plans. I would love to live in another country, somewhere like Finland or
Sweden [or] Amsterdam. I'd have three dogs and be living with my significant other. I'm studying Psychology. And I'm going to pick up a minor in Biology because I want to do something with neuroscience. In a perfect world, I would be like Derek Shepherd and be a neurosurgeon. Unfortunately, I can't be a neurosurgeon because I'm not good at math because of the dyslexia, so I kind of have to weave around that and do something still related, but not necessarily doing the surgery part. I remember taking AP Psychology and having one day that we dedicated to the most basic learning disabilities like ADHD, dyslexia, and some associated disabilities and it was just fascinating to me. I really like looking at brain scans and like identifying structures. I think it's really interesting how if there's a tumor, a tiny, little tumor, how that can drastically change a person. And I'm taking a functional neuropsychology class right now and I'm loving it. I want to work for a hospital or a children's hospital and do stuff like that. And that would be my dream for my future.
In everyday life, I do mess up spellings all the time. While I'm texting or reading something out loud or while I'm driving. Sometimes I mess up how street signs are supposed to be read, but usually I'm able to recognize it and correct that mistake. That's something my tutoring helped me with; [to] notice my gaps in order to, like manually fix it. I have to take longer to read. I can't just glance at [something] and know what it [says]. When I'm really tired, it gets really bad. So if I'm hanging out with friends or if I'm texting someone, if I'm tired, I'm going to mess up on the words or spellings. That is one thing I tell new people in my life. Like,
“Hey, I'm not an idiot. I am dyslexic, so bear with me with spellings. If you can't figure out what I'm trying to say, just say, ‘Hey, I don't know what you're saying.’ And I'll try my best to reword my sentence.”
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I think [it’s made me] more confident and hard working. Just to get to where I am today, you can't be some scaredy cat that doesn't care; you have to work at it. I mean, yeah, sometimes you struggle in certain areas. I do have days where I don't think I'm smart enough or I don't have the capabilities, and that's when I call my mom or dad or I talk to my friends. I know it's kind of cliché, but I can do whatever I want if I put my mind to it. It might take a lot more work, [but] I don't feel prohibited from doing things in my life. I don't think I'm incapable. The work doesn't scare me; I like hard work. As long as I see it's worth the effort, I'm willing. And if I'm like, if it's not worth it, I don’t do it. But it’s my choice. It wasn't my disability's choice.
It's kind of been a weight on my shoulders, but it's made me stronger if anything. It really taught me how to work hard for what I wanted. It's taught me a lot and I'm sure it has more to teach me. And I'm looking forward to seeing what my life is like with a disability. I'm positive about it.
Gwen’s Narrative
I've wanted to go to college since I was three years old. My favorite thing in the world is to learn. I love reading; it's probably one of my favorite things to do as well. I’ve played tennis since fifth grade. And then I was also big into mock trial all four years of high school. I want to travel the world. I don't quit and I never take the easy route. I really, really like pushing myself.
I've always wanted to be in a science field. I have always been interested in animals, especially. [When] I was little, I used to watch Animal Planet more than anything else. Instead of cartoons, I would watch a show called The Most Extreme. It listed off animals that were the most extreme in different categories. And for a while, I wanted to be a paleontologist. When I got older, I started to actually be in biology classes, and I just really enjoyed it. Then I started learning about genetics and learned that's what caused my learning disability and I found it
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interesting. And I learned how important DNA and genes are and how they can save a life with gene therapy and use it to solve problems with cancer and other disabilities. I thought it was such a new, exciting field and something you could always be learning within.
Diagnosis. I really, really liked school. We had little books we had to read and that was hard because I was not doing as well as the other kids. And I just kind of felt stupid for it. I didn't know why I wasn't progressing. My mom would read to me every night before bed so I really wanted to be able to read and it was very frustrating that I couldn't read, even though other people were. I couldn’t tell necessarily that I was different from other people; I was just frustrated with myself for not being able to do more.
I found out officially in the fall of my second grade year, but it started as early as
kindergarten. My mom had always had a suspicion something was going on, but she didn't
really know what it could be. They said I was smart, so it didn't make sense why I couldn't read
like a normal kid. And my mom kind of was worried about me for that. And then my teacher
suggested, “Maybe she's dyslexic. Maybe send her to tutoring.” So we tried that through the
school. It was just one-on-one of what they were doing in the classroom and not specialized to
help someone with a learning disability. The school wasn't being super helpful because I was
still getting pretty good grades and all that. It's just I couldn't read. And obviously that affects
you more as you get older and not so much when you're in kindergarten and first grade. So my
mom ended up getting me tested in second grade [and] they told my parents I was dyslexic. And
then they found me an Orton-Gillingham teacher to try to teach me how to read.
I give my parents so much credit. They were so fantastic. Immediately, my mom just did
all the research she possibly could to figure out what was going to be best for me. And my dad's
been the biggest advocate for me. My dad has [dyslexia], but they didn’t find out until after I
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was diagnosed. He had a really hard time in school [and] he didn't want me to have those same
feelings of being stupid and stuff. So they did everything they could to help me. They just
explained like, “This is why you're having a hard time reading, so we're going to help you.” So
it was never a huge deal. I think I was just happy I was getting help.
Even though we called it a learning disability, I've never thought of it as a disability, I
guess. I've always just thought of it as part of me that I just need to keep going with because
there's a lot of positives with it, not just negatives. That may get overshadowed when you have it and the school system's like, “Oh, we need to help you for this.” It's made me be more persistent
and stubborn and I think it helps me be more creative and use more problem solving. I don't
think I would necessarily have those skills if I wasn't dyslexic. There's been so many good
things to come out of it. And it's something I've lived with so long that I don't separate myself
from it at all. In fact, I love being dyslexic. I love having my disability. I think everybody
needs something that's a little challenging, but it makes them more unique and a better person. If
I was given the choice between not having it and having it, I would choose having it 100%, every
time. Because I don't think I'd be the same person without it.
Educational experiences. In elementary school, I think they kind of failed a little bit in
helping people who learn differently because they were very stuck in one way. They did have
the resource room and they took me out of the classroom and put me in a small group for reading
and English. And that was the worst part of it; having to actually physically go out of class and
be in a trailer outside of the school building. Kids would ask, “Why do you get pulled out?” and
I wouldn't want to answer. We did pretty much everything the other class did just in a small
group setting. So it didn't really seem to change what or how I was learning, just the size and the
amount of time I spent on things. I only had to do that for one year, thankfully. And then I
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started getting outside help through Orton-Gillingham tutoring in November of my second grade
year, so I started improving and then I didn’t need to be pulled out anymore. So I'd say that then,
they didn't do the best. They were a lot better about teaching different methods in high school,
but not so much in elementary school when I needed it the most.
I didn't need to be physically pulled out anymore, [but] I still got an intervention person
in the room. There were several kids that needed it. So there's just like one person in the room
for all of us. I had an IEP starting in second grade. And it kind of changed a little bit over the
years, but in the beginning, it was double-time on tests, a reader, quiet test room, and then spelling didn't count for me unless it was stated, like a spelling test. Those are like the big things that I had pretty much though high school. And they started providing books on tape for me to listen to when I was in class, which was helpful. There were like two or three of us, so it wasn't weird. Everything was carried out completely. No one ever tried to lessen what I got. They actually gave me more than I needed a lot of the time. My teachers were always very good about it. Any time I asked for something, they were quick to give it to me.
It was gradual, but definitely between fourth grade and seventh was when a lot of stuff became easier. I think I had discovered tricks to helping me read quicker because really it was the speed that I was reading with that was the hardest thing about it. If I had all the time in the world, I could read it. But a lot of the time, when you're doing daily things, we don't have all
that time. I also think I started kind of memorizing what the words looked like, so I started
recognizing things by memory and not so much by trying to read it. I am dyslexic, but I've
overcome a lot of it and am very proficient in reading. My biggest issues are really more with
spelling and reading out loud. Words just don't really stick in my brain how they're spelled. I
52 can understand meanings and I can read them fine, but the actual spelling itself doesn't stick in my brain, no matter what I do.
I think the biggest thing for me was just to keep practicing and keep working on it. I really, really wanted to be able to read, so I read a lot. I listened to a lot of books. My mom read to me a lot. And I did [Orton-Gillingham] tutoring twice a week for four years. So I was constantly working on improving and learning strategies to become better at it. I think the biggest thing that helped me was learning root words and prefixes and suffixes. Because then, even if I didn't know a word, I could at least figure out the basics of it and try to understand it that way. And so even though it took me a really long time to get there, it was just taking my time and constantly working at it. For some people, it's a lot harder. My issue was never the comprehension; it was always fluency. And I think that that's probably easier to fix than the comprehension. But for me, that's how I was able to overcome it.
I know some teachers were at first skeptical when I told that I was dyslexic. Starting in sixth grade, I was in almost all enriched classes. Most of the people who have an IEP are in the lower levels, so the teachers just didn't know what to do about it. My sixth grade English teacher would go out of her way to make sure I was understanding. And she wouldn't make me do popcorn reading, thank goodness. One teacher, my junior year Physics teacher, he actually called my parents. He said, “I know Gwen has an IEP. I'm excited for her to be in my class. I just want to make sure you know I'm gonna do everything in my power to make sure she has a great year and accomplishes all her goals.” and gave my mom this long speech about what he could do to help. He was incredible. And he was never obvious to the rest of the class. Come to find out, he actually had dyslexia, so we're pretty sure that's why he was so great about it.
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I feel like sometimes [teachers] formed an opinion about how smart I was based on [my diagnosis]. Especially my AP English teacher. I qualified for AP English, [so] she should've known I could handle it. I went up to her after class on the first day and I said, “I want to warn you that I do have an IEP.” The first thing she said was, “Are you sure you don't want to drop this class?” And I was like, “No. I like a challenge.” We probably had a five or ten minute conversation where she just kept repeating, “Are you sure you can handle it? It's gonna be a lot of work. You should drop the class.” She just kept asking me, which just made me mad.
Throughout the year, she would do snide little things. We were reading Hamlet and I didn't want to read. She called me out in class to read a part and then when I started reading it, she proceeded to say, “I will just read it for you.” And I was like, well, thanks for making this obvious. I was so mad that day. She would just do little things like that where she was obviously treating me different than everyone else in the class, like I couldn't handle it. I ended up with a three on the AP exam and 95% in class. She was definitely the exception.
High school special education experience. I had to go once a week during my study hall to the intervention room so I could ask questions and they would check my grades and stuff. For other people, I'm sure it's great and very helpful. For me, it was annoying and I'd do whatever I could to get out of that. I hated it so much. It was so not useful for me because it was louder with six kids in the room than it was in [study hall] with 200 other people. I got so much less work done. A lot of the people were friends in the class. They had classes together and they were in the room multiple times a week and stuff like that, so they wanted to talk. I was the odd man out. It was the opposite of what you would think; if I was hearing about me from a different perspective, I would've expected to feel more out of place in a normal classroom setting than in the intervention room, [but] it was very awkward to be in there and I did not like it at all.
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They'd also send in students to collect attendance in those rooms. They were [people] I
knew that didn't know I have an IEP. I would try to slump down to be as inconspicuous as
possible. They would come in and like look at the attendance and I was like, doesn't this breach
some confidential thing or something? Obviously everybody in there has an IEP or something.
But they didn't think I was with the students. They always thought I was an aide or something.
The room was in the junior hallway. So when I was a junior, I did not want to go in while
everybody was still in the hallway. I'd wait by the bathrooms until everybody was gone and then
go in the room so I was almost late. I wish we could've figured out a different system because I
just ended up dreading it. I really get fired up about that one. I really hated that.
Because I was considered a pretty easy case, I got bounced around between special ed
teachers. They would automatically put me with the new person because I was easy. I think I
would've been able to build a better relationship with them and would've felt more comfortable
talking with them, coming to the meetings, and even going to the [resource room] more often. I
feel like a lot of things would've been easier for me. My intervention teachers never really asked
me “What do you need?” or “Are you getting everything you need?” They treated me like I was
a lot younger; she would [almost] scold me, like “I'm very disappointed in you.” for stupid
things, which was frustrating. And she would act like she was doing this out of the goodness of
her heart, almost like I owed her something. I wish they would have just talked to me like a
normal person I guess. I just felt disrespected and like I was lesser. I just avoided her.
I was doing so well that they wanted me to come off of an IEP. My parents got very mad when they suggested that. [My parents] were like, “Even though she's doing well, she still needs the extra time. She's gonna keep the IEP because it will go with her to college [and] for standardized testing.” My parents felt like the school didn’t want to help me, they wanted to
55 make themselves look good. And that really made my parents mad. They felt like the school basically wanted to stop giving me any help because it looked like they rehabilitated me. And I don't really know what the school was thinking, but I know that's how my parents felt.
Social implications. When I was younger, I just felt like no one would really understand and I didn't want people to think less of me because of it. I didn't want them to think I was stupid or that I was just not trying hard enough. I wanted people to know that I'm smart. I can handle the same things as you. So I just decided not to tell people about it. I didn't really tell anybody until eighth-grade. And even then, I told one person. Then [in] high school, I told a few more people after I figured out what I thought about it. I think it takes a maturity to kind of understand what a learning disability is and not just judge somebody for it.
Starting in seventh or eighth grade, when I would go out of the room for a test, I was called out by my teacher sometimes. They would say something like, “Okay, Gwen, here's your test. You can go now.” at the top of their voice in front of everybody. I didn't really appreciate that. It was never really big things, but in the moment, it was like, everybody knows. They're all going to think, where is she going? It would make me kinda mad like, are you kidding me? You couldn't be a little more compassionate in that situation and not call me out in front of everybody? And of course I know the teacher's not trying to do anything. I don't blame them, I just wish someone could've [said], be very subtle about this. They never knew that I didn't want anybody to know, [but] I feel like that should have been something they considered. No one was really aware unless they put two and two together. And even then, people thought other random things. I know for a fact in high school, people thought I was getting a harder test because I was so smart. People literally said to my friends, “She's so smart, she gets a harder test and has to leave early to take the test.” And I was like okay, you can think that. I've always prided myself
56 on my intelligence and worked hard to get the grades that I do, so I was always okay with them thinking that I was nerdy.
I would've thought somebody would've guessed, but no one did. People have an idea of what somebody with learning disability is like, and I don't fit that. I won a scholarship for being a varsity athlete and having an IEP. And so, last week of senior year, no one except my close friends knew I had a learning disability, and they called me up. They didn't say I was dyslexic, they just said “Our next scholarship goes to somebody who is a varsity athlete and has an IEP or
504 Plan, blah, blah, blah.” I had to walk up and I heard that a lot of people whispered like, “She has a disability?” “What's going on?” A lot of people apparently couldn't believe it. So it's pretty funny. My teachers came up afterward [and] were congratulatory, but I got a lot of questions after that. I was a lot more comfortable because I prepared myself emotionally and mentally to be called out in front of so many people, so it wasn't a really big deal. But it was kind of funny about the whispers.
I don't know if I needed to necessarily hide it as long as I did. I wasn't embarrassed of it,
[but] I didn't want people who didn't know me well to know because it's not really their business.
My philosophy for disclosing I have a disability is when someone needs to know, I tell them.
But if they don't need to know, I don't bother. That goes for friends, professors, family members, any of that. I realize that there's definitely not as big of a stigma as there used to be on it. Also, I just don't care what people think anymore. I don't think I could've handled it as well as I did if it had come out earlier, but now I'm just very relieved I don't really need to hide it anymore.
Future Plans. I always wanted to be a scientist of some sort even before I knew I was dyslexic. I have worked so hard and I feel like I've accomplished so much. I just want to keep going and going. I don't think [my disability] will ever stop me from doing anything. As of right
57 now, I am planning on getting my PhD in Genetics. And then, I want to work with gene therapy to cure cancer. Or I might go to law school and then my ultimate goal would be to be a Supreme
Court Justice, but that's more unlikely. I have lofty goals. I just want to do something that's going to help people. I want to show people how important education can be and how we're so privileged here in the United States to have education for everybody. And I would love to be able to do something, especially with girls, in countries where they don't get the opportunities we get here. And hopefully between those things, I will somehow impact the world.
I remember when I was younger, the first time I read a street sign by myself. I had driven past it like a million times, but I never knew what it was for because I couldn't read it fast enough. So the first time I read it, I was just so proud of myself and so excited. It's little things like that where I didn't realize how much it affected me until I kind of overcame the difficulty of it. It's made me realize that I am stronger and more capable than I think I am. One of my favorite things I've done was in sixth grade, I read the last Harry Potter book. Up until that point,
I'd only listened to books. And that's a 700-something page book, so I never thought I'd be able to read something that long. That sounds weird, but that's one of my biggest accomplishments. I never actually thought I would do that.
Honestly, I think [my disability] lowered my confidence a little bit in middle school. But since high school, it's raised it because it's something that I can prove to others like, look at all
I've accomplished, and I'm dyslexic. So I think it's actually helped boost my confidence in a lot of ways. It's not a bad thing to have a disability; I think that's the most important thing for people to understand. It's just something that you need to get used to having, like having to wear glasses or something like that. So it's going to affect you, but it's not necessarily going to be a negative all your life. It doesn't necessarily change who you are, it's just part of you
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Jess’s Narrative
I have two sisters. We are triplets and they are identical. We were born super premature, so we had some developmental delays throughout our beginning stages. I like to do well in school. In high school, I was ranked in the top ten for academics. I'm an organized person; I like everything to be all perfect before I go to bed. I'm a Christ follower. I was pretty involved in my church [and] I typically like to volunteer around my community. I like quiet time, but I also like to go on adventures and travel.
I did everything. I was a part of everything. I was in marching band. I would swim before 5 a.m. and would go running after. I was part of [National Honor Society] and class president. And then I would be in school every day, full time, all honors and AP classes. [In
October of my senior year of high school], I was on my way to swim practice and I slipped at the top of the stairs. As I fell, I must have hit my head and went down the rest of them unconsciously. We don't actually know how many times I hit my head. Once I reached the bottom, I had a mini seizure and then I woke up and didn't know what happened. Then I went to the ER and I had a lot of whip lash and a headache. I had some kind of nerve damage or something in my neck; we're not really sure. So, that's how it happened.
Educational background prior to injury. We were put into Montessori school so we could catch up [because of early developmental delays]. At the Montessori school, they taught kids it was their priority to learn. I think that was really helpful because I could definitely learn at my own pace, but at the same time, they were there to help and explain it to me. Each week, they would go through the process of [reviewing] what I did that week, what I got done, and what I [still] needed to get done. So I had to structure myself at a young age. I definitely think that helped a lot going into a public school at fourth grade.
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Once I was in elementary school, it was kind of weird because we were partially ahead
from the Montessori school, so we were in the accelerated track, but I was still in the slow
reading track. I was kind of in both tracks. The gifted program was fun, creative. It made you
think outside the box. The reading program was out [of the classroom]. You sat there with a
few people and you would read and then tell them what you read about and they would check our
comprehension. That's what they worked on. That happened for about three years. It was hard
for me because I was being pulled out for both the gifted track and for the lower [reading] track,
so I would get pulled out twice for two different things. That was hard, especially at a new
school, trying to get to know people. [And] I had to be the one that was leaving for issues with
reading while my sisters were just going to more gifted stuff. The kids recognize that. They're
either bullying you for being smart or they're bullying you for being not as smart. Kids are hard
and there's no way your parents can protect you from that.
[Then], I was not pulled out anymore because I didn't test into gifted again. So I wasn't given that spot, that chance. I was not the smarter one while both [of my sisters] were. So I just
sat back on the sideline with that. I didn't test into the honors program either in high school, so I
had to push my way in if I wanted to learn in that setting because I wasn't above average,
especially in reading. I knew that if I didn't get into that track, even if I didn't test into it, I wasn't
going to learn as much or have the grades or anything. During my summer, I gave up TV and
started reading and they saw a huge change. [I was] in all the honors and AP classes each year.
I wasn't a natural learner. It definitely came harder and took longer to learn than the typical
honors student. If I was comparing [myself] to my sisters, it definitely took me more time to
process and learn where my sisters would pick it up quicker. And [I] ended up top ten, so I
definitely worked hard for those grades.
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Diagnosis. They made it sound like it would go away in about a month or so. They
really didn't know. So at the beginning, it was just considered an injury that would recover.
They were [treating] it as a concussion with whiplash. I wore a neck brace for a week before I
ended up going to the sports medicine doctor. I was in a dark room for a week and I didn't do
anything. No phone, no screen time, no reading, no concentrating. It's hard to tell yourself to
turn your brain off. It didn't improve the headache that much so I started doing half days at
school. I did miss a lot of school for testing and doctor’s appointments. I couldn't function for a
whole day in school, so for a month, that wasn't even tried.
It wasn't going away, [so] they started me on my first medication, Amitriptyline, with a
little amount of school. And then I had computer testing [to] show like the reaction time and
speed that it would take you to complete tasks. But the numbers [were] still showing behind on
everything. So when I would come back, they would just keep doing that and hope I would
show improvement. I tried physical therapy [to] help with the dizziness I had. They were hoping to build up my head to a stimulus to help the dizziness and give me more of a chance to withstand headaches for longer. After a while, I went to [the] clinical psychology department, and that was like a type of meditation. Basically, they're assuming they can train your brain to tell yourself that you don't have a headache; kind of your brain deciding that it's the new normal
to have that headache. So I would sit there and have to try to think about nothing. For days.
And then I went to vestibular therapy. That was another training your brain thing for a lot of
people with like vertigo and stuff like that. And at that point, I was getting frustrated, so they
backed off on all the doctor’s appointments.
I see a headache specialist now. I think the hardest part of the whole process is they don't
really have anything they can do. There's no magic anything that will cure it. It's just what
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they've studied, which is a little amount. So any medication I'm being put on is a drug for
another thing but it's shown to improve this. There are a few options with lots of side effects that take months to cycle in and months to cycle out. She ended up just maximizing my dose of
Amitriptyline, putting me on more Adderall, [and] extended-release melatonin for not sleeping because of the Adderall. I tried another one after going to the ER for headaches. It improved it a lot, but it has a lot of side effects and I ended up having an allergic reaction.
When I was at the doctor, the computer and neuropsych testing results would say kind of where I was still behind [for] processing, short-term [and] long-term memory, and all that stuff.
My processing was slow, so with those results as well as some of the other symptoms, we knew that it would be a learning disability. I did not want to think it was actually happening. I was definitely telling myself, it's not that bad. It's going to go away. So I was kinda like just pushing it away like it was going to go away or something. It wasn't until the third or fourth month that I was really like, this is affecting my social [life], my learning, my college decision, working,
[and] my sports. So [I was] definitely more than just frustrated; I was angry. I used [to use] my swimming as a let out. I went from three hours of working out each day to nothing. And with not being able to do anything, of course I'm getting very sad and very frustrated because it was my senior year.
Disability implications. It's constant adjustment of my life and my day. I know some disabilities are [painful] and some aren't. But mine, it's in everything I do and the pain level goes with it. Sometimes it's just unbearable, but you have to get through it, even the worst days ever.
It’s impacted my mood, body, activity level, relationships, [and] learning. So it's has had a large impact on my life. It's really not just a headache; it's an adapted lifestyle.
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[I] try to do everything perfectly. When I wake up, I can usually tell if it's the weather that day. It's like somebody who had ACL surgery and it's raining, but mine's humidity and weather has an impact on [my headaches]. Just knowing at what point I need sleep, at what point
I have to drink, how hungry I can be without going beyond the headache platform, how much activity, how much involvement. Just the balance of all that. Today, I didn't drink 20 ounces [of water] before noon, I had a late breakfast, I worked out too much yesterday, and it's been rainy this whole week. I got nine hours of sleep last night, but I had six for the past two nights. Stuff like that makes all the difference. They want me to hit a stable point where I feel like I can do it every day. A point where I [have a] solid, low-grade headache [that is] not fluctuating. I definitely haven't hit that point yet, but we're trying. If I can get [that] for months, then we hit equilibrium, so we're just gonna keep [my routine] at that for the rest of my life. The headache specialist wants to [get me to] a steady life like that until forever, I guess.
I don't know if people actually understand how the disability works. Because most people [have] had a concussion or know people who've been diagnosed. And a lot of people will recover really quickly with a week of rest. And for some people, like me, that didn't work.
[And] everybody gets headaches. The day they have a headache, they're angry and moody and just want to be done. Take some ibuprofen or something, it goes away, and [you aren’t] thinking about it anymore. But guess what; I've had one the whole time [and] no, ibuprofen isn’t going to help. But I don't want to just keep talking about it and I don't want to ruin other people’s time if they're having fun, so I try not to make it sound that way.
School changes. For the first few months, I didn't stay the full day. I would come in around third or fourth bell; I think it was fourth bell. The first bell was a study hall, second was art class, third I worked in the office doing service learning, fourth was Calc, fifth I forget, and
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then [AP] Government and [AP] English. So it's definitely heavier after the first half of the
morning. I would stay home and just not be in the noisy school and come in tardy. I would go to
the library for lunch because it was too loud in [the cafeteria]. I needed to complete English and
Government just so I could graduate, [but] mostly I was just trying to keep up.
My teachers were very understanding. They knew that I was a hard worker and that if I
was asking for something, it was needed. They were very adaptable. [My doctor] would write
up an evaluation that would tell them what [accommodation] options we discussed and which
ones I wanted to try. My counselor worked with me to help communicate it to my teachers.
They gave me extended time, tests alone, [and] more time to do homework and to read. They
listened to me. [That] was partially due to my communication and part them knowing that I still
really wanted to be successful even if I needed help. I think it's definitely a two-way street
between teachers and the student.
I definitely have to take a lot more time to learn. I know right after [the accident], I
noticed my processing [ability] was a lot different. I remember going to the doctor and she was
like, “Yeah, that's what it's gonna be. Your head’s gonna hurt so much sometimes, you're just gonna have to stop. And even at the beginning of your studying, sometimes it's not going to benefit you to keep going.” So I might be reading words, but you literally you don't know what you're actually reading. Before, I never had to think about that. [If] I'm noticing that my brain is getting really tired and it just doesn't want to function through it, I'll just take like a 20 minute break where I don't let myself sit on my phone or do anything. Just recognizing the signals of the fatigue and knowing [I] need more time to understand the material. There’s definitely not always enough time to get everything in, so you have to pick your priorities.
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Family reaction. My dad felt bad. He saw what I was going through and didn't want me
to have to do it. He just wanted it to go away. And my mom was the one like, “I'll try anything
to get this gone.” [And later] talking to the doctor like, “We can't do anymore. She's tired.” My
sisters, I don't know. I wouldn't say they provided emotional support. The attempt might be there, but that's just not the way we work, I guess. They didn't think it was anything. One night at dinner, [my sister] was complaining. She was the valedictorian and she had five AP [classes] that semester. I had three, but she had five, and I had to drop one. And she said, “Well that's easy for you. All you do is sit there and do nothing all day and I have hours of homework. Look at me sitting here and doing hours of homework, but you get to miss school and you don't have to do this, you have to do that.” So she obviously doesn't understand it. They just saw it as an advantage compared to them. And that's what made me angry. They don't get it, but my parents, they do.
Social implications. Basically the entire year, I didn't go to lunch. The majority of socialization time is at lunch, so that definitely took a toll after a while. And there were a good number of events for both high school and college that I didn't participate in because of [my headaches]. So you might be thinking, it's no big deal that you're not there. But I'm not there; I don't know what I'm actually missing. You have to think about where you're eating, where you're hanging out, what you're doing, how noisy it will be, how physically tiring, mentally tiring it will be for everything that I do socially. Even a movie; I didn't go to the movies because of the screen time and loudness of the movie. So I have to make the choice knowing I'm missing stuff, but I'm going to be better off for it.
The worst part is people not understanding it. I think that's a pretty hard one. I've kind of resorted to, I don't want to emphasize it because I don't want to hear you tell me about ways I can
65 make it better. I've done all I can do. Or I don't want to hear it downplayed any more than it already is. I don't want people to say, “Oh you seem fine, you seem normal, so stop complaining.” And I don’t want to be viewed as a complainer. I think that would be the worst thing; not feeling like I can tell people. If it's not [an] outwardly apparent [disability], people don't know about it until you tell them, so they might not think it's an actual disability. That's sometimes harder for them to accept and believe because they already have the vision of you being normal.
Future plans. My ultimate goal is in any situation I go into is to serve other people. So at my job, even when I'm getting paid, it's my job to serve my coworkers and my boss. I'm not gonna complain about getting up [to] do whatever they need me to do. Keeping that mentality that it's not all about you when you're there because it's your job to serve. Being understanding and being there not for yourself or for the money, but for others. With that mentality, you can get farther than “just another day.” Ultimately, with my job, I want to be empowering people.
Empowering small businesses is something that I would love to do. Helping them get on track
[and] organized so they can function and keep moving and growing. Setting up that plan for them would be awesome. So not necessarily being the top person, but being the person behind the scenes making sure it all gets done right.
I want to say [I won’t be held back by my disability], but I think I will be because every decision is based around it. Everything is weighed in pros and cons. And there's definitely things I don't do because of it. Not necessarily me being successful, but I might rethink some of the fun things that I would've done. I know I can't go to concerts or rallies that are supporting something that I might want to. And athletically, I was a swimmer and a cross country runner. I know I want to do an Ironman, but that just might not happen. I wanted to be on the club swim
66 team, but I wasn't allowed to participate because my doctors didn't want me to. So, I didn't do that. Those kinds of limits. It's not necessarily the end of the world kind of stuff, but it's definitely something you wanted to experience. Like, skydiving? I don't think that's a very good decision. But dang, I should've done that before October 16. You know, that kind of stuff.
I've learned a lot from it. I think my perspective on learning and my value on things is greater. I mean, that's the only real positive way you can see it, is gaining perspective. When I go to the doctor, they ask for [a] rating of how much you feel like your normal self. And I know
I'm not 100% the same, but I'm never gonna be 100% the same. And I definitely think it's been a good reflection [for me]. With it, I had to rely on a lot of people and [have] definitely grown.
There's times when I’d like to say, just give me no headaches, but I've definitely learned a lot and have more of an appreciation for everything your brain does. I kind of view it as a disadvantage compared to other people, but I try not to think about it as a disability because I know other people don't see it as a disability. So I still hold myself to the same standards as others. You can't just hope it goes away or pretend like it's not there. You have to do what you need to do to take care of it and make sure you're still reaching your goals.
Nick’s Narrative
I hate talking about myself. I don't think I'm anything particularly special; [just] some guy. I'm the second of four sons. That was fun when we were all little. [I] spend a lot of time playing video games, watching anime, and stuff when I'm not doing anything. I'm terrible at games that involve hand eye coordination and quick reaction time. Games that go by very slowly [where] I can think about what I want to do, I can do better at. I'm majoring in
Information Technology, [so] I obviously have a big interest in computers. I'm kind of a dork. I get my interest in all of my nerdy hobbies from my dad. I blame him for all of that.
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I am immensely focused when I decide I want something. I'm incredibly stubborn. So if
I decide to do something, I'm going to do it or die trying. That works against me as often as it
does for me. I tend to think through my problems very carefully before I do anything. And that's
a lot of what software is. The better you get, the less it is about actually writing the program, and
more that you sit around and think about exactly what you want to do and the best way to
organize it. [That’s] something I have something of a talent for. At least I like to think so.
Beyond that, I enjoy going on long walks. It's a good time to think. I’m not a very social
person. I have a harder time talking to people, so I don't have as many friends as some other
people would. I'm just really introverted, I guess. I prefer to be very independent. I just work
better that way. I'm used to having responsibility and taking care of things on my own.
Disability. To the best of my knowledge, it was my parents who noticed that something
might be happening because I was struggling to learn how to walk. I couldn't go more than a
couple of steps without tripping over myself. I'd like to say I've gotten better, but well, I still do
it sometimes. I think that would have been their first clue. I think they might have gone to the
pediatrician who went to a psychologist of some kind. And then I worked with the psychologist
for a long time. Once I got the official diagnosis, then they had to go to the school [to] get the
paperwork sorted out and so on.
It was a non-verbal learning disability, very black and white. I met the qualifications, for better or worse. And it's a disability, it's in the name, not that I understood what that meant entirely. I would have been eight years old at the time. I could tell there was something wrong with me and that's what my parents were talking to the doctors about. I knew I couldn't do the same things my classmates could do [and] I knew there was something wrong with me, but I couldn't understand that the two were the same problem.
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I was awkward [and] clumsy. And that was because of the disability. I knew I had certain accommodations that the school made for me. I struggle with motor control. I struggled to learn how to write letters. My handwriting still looks like a grade schooler's. And I couldn't play with [the other kids] or something. I was too awkward and clumsy to build cool block castles and whatever it is that little kids do. I remember I had to do a whole bunch of different types of weird tests, usually coordination and balance and even a little bit of math. I don't know what they are called, but I’ve repeated them a couple of times as I've gotten older. But, being so little, I had no idea what they were trying to test me for [or] trying to figure out.
After the diagnosis, I started going to [occupational] therapy and I was confused as to why I suddenly had a new thing to do every day or every other day or whatever the schedule was. I didn't understand what they were asking me to do or why they wanted me to do it. I just started having strange people telling me to manipulate little balls in my hand, or other tasks, hoping to get rid of some of the awkwardness. Fine motor skills was something they worked on, and balance, hand eye coordination. Honestly, I didn't know what those words meant. I wasn't old enough and mature enough yet to understand what was going on. All I knew was that my life was really hard. And there was no one who could express to someone so young why that was and that it [was] not always going to be that bad.
Educational experiences. I tend to learn best verbally. If you want me to do something, just tell me. You need to be very clear and concise. If you leave too much to me inferring, I might not do the thing you intended. I find things are easier if there's a standard, formulaic approach I can take that works every time instead of looking at it and just feeling it out the way some people do. It's helpful if I have a book [because] that's something I can confidently go
69 back to and reread. Beyond that, I think having someone checking my work frequently helps a lot, particularly when I'm doing something that has a lot of complicated steps.
[My accommodations were] extra time on exams, allowed to type anything, a copy of teachers’ notes and things from the class. When I was really little and we did a lot of projects, I was supposed to be given an alternate assignment or something that showed I knew the subject but wasn't graded on how good my project looked because my arts and crafts skills were worse than an average grade schoolers’. But I stopped using most of them. As I got older, teachers wanted things typed anyway, so that wasn't an issue. We didn't have to do so many arts and crafts kind of projects, so that became another nonissue. I still need the extra time on some exams; [it] depended on the subject. I was fine for multiple choice tests in history or something, but definitely for the math. Some people are smarter than me, screwed up brain or no. But, I think I was doing just as well as everyone else. Difference was mostly just intelligence.
I know teachers had a lot more scrutiny placed on them if I was in their class. And they didn't like me. So if I didn't say anything, they didn't give me any accommodations. If asked about it, they would say, “Nick's old enough to speak up for himself.” [But] then as I did speak up for myself, if I didn't choose my words very carefully, they would think I was challenging their authority, and they didn't like that either. They were definitely not above taking it out on me if they could if there was something they could do to get me into trouble. I don't think they were necessarily discriminating against the disability, they were frustrated [that] they had extra work to do. I understand that's frustrating. I would hate that too. But they were biased against me. I think a lot of it is just not taking it personally when a student has a disability and needs something changed for them. A lot of them felt like it was an attack on them or their teaching style. And that not how I meant it in the least. I think it would've been better had I been able to
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advocate for myself about without fear of angering anybody. But not all the teachers were like
that. I complain about having bad experiences, but I had just as many good ones.
High school teachers were much better about disabilities than the younger grades, [so] it
wasn't much of a problem. There were still one or two where I really had to stick up for myself
and I had to work through the intervention teacher, but as I got older, a lot of my teachers were
more relaxed about it. I guess it would be because I was taking a lot of advanced classes, so I
had already proven that I was capable of doing it. And I think a lot of teachers weren't willing to
put in the extra work for students who may or may not be able to succeed no matter what they
do. That's just my guess. The best teachers I had, [the] thing they had in common was that they
didn't really care about the disability. They recognize that I am more than just having a little flag
next to my name on the attendance sheet, and they spent the time to talk to me. And that was
something that I came to value more the older I got. I think that it helps me explain my disability
and to work with someone on my disability the longer they talk to me, even if it's about nothing
related to disability. That's something I think the good teachers really did.
Between my parents explaining things to me as best they could and me trying to take
responsibility for it at a young age, I didn't necessarily need the intervention specialists all that
much. I got the feeling they weren’t used to dealing with people like me. The other students with disabilities seemed to be okay with just getting through school and letting the intervention specialists handle everything. I, on the other hand, insisted on speaking for myself and was determined to be as successful as I could be. They saw me as an example to the other students,
[but] I didn't feel like I was doing anything that shouldn't be expected. A lot of my intervention specialists were almost too supportive of me. I would get a “C” on an exam [and] they'd be really proud of me because not only was that a “C,” but that was a “C” on an AP exam. But I
71 expected better of myself than that. They were amazed that I was in that class at all. That bothered me. They didn't mean it that way at all, but it was something that I did note. They set the bar low as far as I'm concerned. And I also knew when it really came down to it, they tended to side with the teacher more than helping me. So I couldn't entirely trust them to handle things on my behalf. If I didn't push really hard, they would kind of slack off. I felt like it was far better for me to work things out with the teacher directly [than] have someone else advocate on my behalf.
If you have a disability, it's not something you asked for, but it's your responsibility to do everything you can to make up for it. That means you have to work harder, like I had to do. I don’t think it's an excuse for you to rely on other people too much. There should be people that are willing to work with you and help you when you really, really need it; that's what the school should be there for. But I think it's something a person with a disability has to learn to manage on their own. My experience was that a lot of people with disabilities tend not to do as well.
And then people will assume that you can't do things [and] you have to try extra hard to prove that you can. When I was in the eighth grade, I wanted to go into the honors program in high school. At my school, you had to get a letter of recommendation from your teachers. Most teachers are willing to pass off most students who had an A or B without a second thought, but for me, they had to think about it more and questioned me. I think it's because I had a disability.
And even sophomore [year], when I first I applied to get into AP, my teachers were willing to promote most of the students without thought, but I got questions about it. And it got on my nerves a little bit [that] I was singled out.
Social implications. Part of my disability is that I'm physically very awkward and clumsy. That was a lot worse when I was a kid. My classmates could pick up on it. Even if they
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couldn't describe it or didn't understand what was going on, they could tell there's something
weird about me, [so] they didn't want anything to do with me. So I tended to spend a lot of time
by myself. I can't say that I blame my classmates for thinking worse of me because there's no
way they could possibly have known. I remember not being able to sit in a chair properly. I
would lose my balance and fall [out of] my chair in class. And to be honest, it was probably
hilarious, but when you're ten years old and can't really make friends, it's harder to laugh it off. I
think that affected me a lot. Maybe that explains why I am still socially awkward and tend to be
by myself most of the time, but maybe I'd be this way anyway. I don't particularly know.
I think I was always the shy and quiet one. With anyone I ever talked to, I didn't say a
whole lot. I found that I had a different view on the world than most my classmates. They
would be gossiping about something or complaining about a test and I'd be like, “This is dumb.”
or “It's your fault; you didn't study.” I tend to keep to myself. Occasionally, I'll say something
smart-assy just to remind everyone I’m here. Even in a fun setting, they didn't really want to talk
to me very much. So I kind of sat alone. Even if it didn't impact me directly, there was still that,
I don't want to say social stigma, but I was someone that they didn't want to talk to. I tried
playing little league soccer for a while, but I [couldn’t] keep up with everyone else. My coordination, balance, everything is just noticeably worse than the average person. So all I really did was embarrass myself. But I tried, for what it's worth. I tried to be normal.
I think that by sixth or seventh grade, I accepted my status as a social outcast. Like, screw the whole talking to people thing, I'm not gonna try anymore. As I got older, between people getting more mature and me not doing things that showcased my disability as much, my
isolation was mostly my own choice. Mostly me not branching out [and] talking to people as
much. My parents would argue on that being because I was picked on so much when I was little,
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but who knows. I stayed that way for a while. But I think there's a happy medium. And that's
something that I found now that I'm older [by] meeting people with similar interests, talking to
people, coming out of my shell a little bit. I think there's a distinction between being true to
yourself and just being a dick about it. So you should try to be nice to people. It's the right thing
to do. It was wrong for me to totally give up on society.
Sometimes people still notice that I walk funny or hold myself awkwardly, but now I'm
old enough [to] know what's going on and can describe it to someone. I tend not to talk a ton
about it when I first meet somebody if I don't have to because I want to make a good first
impression. But once I'm comfortable with someone and they're comfortable-ish with me, I'll
say something about it if they notice or when they notice. I have a very self-depreciating sense of humor. I'm incredibly sarcastic and I crack jokes at my own expense and that helps me deal with the disability. If I make a smart-alecky comment about it, no one else can. I find I have fun with it. Only way I can deal with it, I suppose.
I feel like maybe I missed out on being very social and outgoing, having a lot of friends and things to do every weekend. I'm shy and I don't really want to do that anyway, [but] maybe
I'd be a different person if I didn’t have a disability and wasn't made fun of so much as a little kid. Personally, I think it's pointless to beat myself up over the person I might've been. Maybe
I'd have more friends now. There's no way of knowing. I tried answering that question; I rapidly got nowhere. So I prefer to accept myself as I am.
Future plans. I study Information Technology, specifically the software track. There was a time in high school when it occurred to me how immensely powerful a computer is. And you can solve just about any problem with it. I'd like to be able to help people in some way.
There's not a whole lot I can do directly, but if I were to write some program that does it for me,
74 then all the better. Good fit for me I think. I think [my disability] certainly holds me back in some areas, but everyone has all sorts of things that hold them back, so I can't claim to be particularly disadvantaged. You can accomplish great things just with hard work. You don't have to be a special person to be important.
I think [my disability] destroyed a lot of my confidence when I was little. The only ways I could really measure myself were compared to other people, specifically in areas that were impacted by my disability. A lot of little boys put a lot of importance on how you do in little league baseball. And when I couldn't do that to any meaningful level, I felt badly about myself, and people felt badly about me. But I think it keeps me humble now that I'm older. It reminds me that despite what I tell myself, I'm just as flawed as the next person. I’ll think I'm a genius and then I stumble on the staircase or something. I’ve had experiences most kids don’t have to deal with, so I grew up a little bit faster than some people. And it helped me, I think.
I think a long-term goal, or something I've always tried to do, [is to] do something great or exceptional. But not, you did well for someone with disabilities, you just did well. And thus far, I've been unsuccessful, but we're getting there. I think it's hard for me to take pride in what
I've done because I know that I've always needed someone else's help or I've had help to make up for the disability. I want to say I accomplished something difficult in general. Not, doing average is great for someone with a disability; I want to do something that's just, hard for anyone. Call it arrogance or pride or something, but that's important to me. I want to be able to look at something and say, I did this. There are people without disabilities that couldn't do it. [I want to] not have to acknowledge that I had someone there to catch me when I fell or to help make up for my weaknesses; it was all me. And I think that's important to focus on.
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As much as it impacts me, I think there's a couple of other things that define me. There's a long list of things that make a person, a person: my personality, my interests, [and] how I was brought up. All of that impacts who a person grows up to be. Disability is one of those things, but it's not more important than the others. We all have things that separate us from other people. Mine just happens to have a fancy name for it. The earlier you accept it, or the more you realize that it's okay to have a disability, or you’re no worse than the next person, I think that helps a lot. Don't beat yourself up too much about it. Just try to find your own way of dealing with it and move on. That's what everyone does for every aspect of their life. Don't worry about being normal. If you don't fit in with one group of people, fine. Find people who accept you anyway.
Reid’s Narrative
I'm a thinker, analytical. When I was a kid, I was always big into taking things apart, learning how they worked, asking a lot of questions of my parents. I started using power tools when I was pretty little. I like to take control of things or help be in charge of things. I can be a bit egotistical at times, but also do not like taking compliments. I tend to be highly self- motivated. I love a good challenge. Hate sports. Love photography, traveling, all that kind of stuff. Generally, more of an introvert. Usually, quieter. I do come from a big, Italian family.
Educational story. I originally went to a Catholic grade school right by my house. The way that it all started was I was in first grade and my teacher recognized it because she had a kid that also had some sort of learning disability. I'm not sure what. She kind of recognized that there were the signs of it and told my mom very specifically, “Go get him tested because if you wait on the system, it will kind of be too late and they’ll just shove him through.” I think it's total bullshit that they do that. I think a parent can see something right away. And saying, “Oh,
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we'll see if it calms down,” that's dumb. So that was kind of what happened. And [my teacher] knew of this place called Springfield [(i.e., a pseudonym for a private school and center that specialized in the instruction of students with learning disabilities)], so it's kind of like, thank
God for her.
And if you looked at me as a student and a person, it should of been pretty damn clear that I had a learning disability because I was very articulate. I was a tinkerer, thinker, that kind of stuff. It was very much that the ass-in-seat classroom was my nemesis in some aspects. I was doing all the math and stuff and redesigning a water fountain [in] kindergarten class, but give me a book, and I'm screwed. So it's kind of one of those things where I had enough outward signs that it was pretty clear.
In second grade was kind of where they started to try to do accommodations at my current school, and that did not work out well. Their version of accommodations was, you're in your class like normal, and then any sort of fun activities or anytime you have something else, they pull you out and you're in a small-ass room with poor AC, one person, a ton of books, and you're doing your work for extra time. It was literally a broom closet. It didn't really help.
Because they're like, “We'll give you extra time. Do your stuff.” And you know, that's not fun, getting pulled out for everything. It may have been improving my reading, but it was making it worse in general. I know [kids] had questions about it and were just assuming I was freaking stupid. More than anything, I think it was that assumption that I was stupid and that's why I was getting pulled out of class. I was hating school. And I wasn't hating school cause I sucked at reading; I was hating school cause I sucked at reading and I was also being pulled out of class and all my classmates were asking.
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And then in third grade, [I] transferred to Springfield which is for kids with learning
disabilities and things. I was there through eighth grade. I know that I was so against changing schools. I hated my school with a burning passion, but for some reason, I was so against it. I think part of that was kind of that final piece of recognition [that] I need this help. From the beginning, I was very conscious of stigma around anything. But I think the gratification of [the diagnosis] was also kind of weird to me. But that's kind of the main thing that stands out to me.
That and I do definitely know that I hated my parents for changing schools. I was there through eighth grade [then] went to Lakeview High School.
Diagnosis. I've never been able to officially describe what my learning disability is.
Mostly [a] reading disability in terms of my ability to make meaning of the words that I'm reading. But when I hear them, I'm fine. So if you give me something to read, I will spend 90% of my energy pulling the words off of that page, and I spent so much time doing that, I kind of lose the ability to grasp the larger meaning because I'm spending so much time on each word.
My ability to express myself in text is not as good as me expressing myself verbally. My brain moves faster than I am able to produce [writing]. A lot of the time, I'm adapting what I want to
say. Writing isn't just me on paper, it's me rearticulating what I wanted to say. Which I think is
a difficult thing. I believe that I had some sort of tracking disorder as well because there was a
while that I was wearing glasses and doing some sort of motor tracking exercises, but that was
something that I kind of outgrew. I don't even remember what that was, but [it’s] part of the
reason I'm shitty at sports.
It was kind of gratifying to know I wasn’t crazy and that I was experiencing something
that was actually real. There's a reason why it takes me four times as long to read something or I
stumble through a paragraph. It's not just me being lazy or something like that. I think one of
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the most interesting things to me is that I literally can't comprehend the idea of sitting down to
read a long book or something like that. There's times where you have to almost remind yourself
that it's a learning disability, it's not just you. It's also part of me at the same time. So it's kind of
that weird dichotomy; my learning disability is a part of me, but then when you suck at spelling
and reading, that's the disability, it's not me. Part of it is acknowledging that you're different.
Which is both empowering and terrifying. It's becoming more accepted; it's like a thing now.
You have a learning disability, you're not stupid. But it's one of those things, it's always kind of a reminder of a difference. They can do more than me. They can read faster than me. That's just the simple fact of it. And it's been fantastic for my character in some ways cause I've had to learn how to deal with it and everything, but it's also been kind of an extra challenge, an extra burden. So while it was gratifying, getting a diagnosis, I knew it came with other implications.
It became real.
But I think that was something that caught people off, the term alone. Like when you say that, people don't know what a learning disability is. Sometimes people are shocked by it. I know it affects me, but I don't consciously think about it on a daily basis. I don't tend to tell people. For me, it doesn't have any relevance. Usually people will mention something saying I did a good job hiding it, which isn't really my goal. If I could, right now, just turn it off, or like slightly longer ago, like high school, maybe [I would]. But to never have had it, probably not cause it comes down to separating it from who you are. I probably would not be the same person.
Educational experiences. My first grade teacher, I don't know how she knew this, but she told my mom, “Beyond everything else, he's growing up in a fantastic time because technology is kind of coming to a point where it will save him. It will fix so many problems that
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he has.” And I use technology to augment things that I'm crappy at. Spell check and read aloud
and stuff like that. It's a disability because it's such a hindrance, [but] with technology, for me, I
can turn it into a learning difference.
I'm going to pat myself on the back. I'm a pretty damn good student. I got pretty good
grades. I always got honor roll and everything and I would usually score pretty high within my
class. But then I would go between disability services, which had students which were barely
scraping by, so it was interesting for me to kind of walk that line between the two. But
generally, I was a pretty good student. I generally had my shit together.
So the way it works [at Springfield] is there's a class of 12 students. And there's a teacher
and an assistant. So for most of the classes, you break up into two groups. And I don't know
how they organized it, but I assume they organized by reading level because both groups weren't
always reading the same book. The whole idea is to bring those services [where you would
usually] get removed from the class into the classroom as much as possible. They present a lot
of strategies for how to do things. And then I think the strategies kind of fall away to a point and
just become what you know. That's one thing that is always hard for me; I felt like I wasn't
always using my strategies. Like in high school, I was like did I even learn anything from
Springfield? But I did.
At Springfield, it's very hands-on and they're trying to train you so you know what you
need and know your disability. It's more about me understanding the way my brain processes things in general and kind of adapting to that. Springfield is much more of an open environment.
One thing Springfield did and I participated in was being an ambassador. When I was in seventh and eighth grade we would talk to fifth and sixth graders [at local schools] about disabilities. I think one thing that's still really important is for you to take that advocacy, taking ownership and
80 not having to depend on everyone else to get your stuff done. I think I've done a pretty good job of it. I think Springfield prepared me for that.
Mainly there was one person [in high school] that I worked with who was in charge of like maintaining everything, [the] intervention specialist. I didn't like her much, to be totally honest. She was mostly fine at her job, but the way she handled some things, it was a little dictatorial for me. She was so concerned about just checking the boxes and the academic side of it, but not understanding the social implications. And that was hard because I liked the idea of having a low profile, which meant keeping her away. That's part of the reason I clashed with her. I was like, I'm not going to come to you for every test or exam I have, especially if I'm already getting a good grade. There's no reason for me to be there. I always told her, “If I take a quiz and get a bad grade, the next one I'll be there. But I'm going to try on my own first.” I think that's the biggest thing in high school; making sure you don't stick out like a sore thumb. And she didn't seem to understand that. Teachers are always like, “Well, if you need the help, then get it.” Well, that's assuming that school is just about academics.
I got my accommodations as needed. Extended time for tests, readers for tests, and digital format. [But relying on accommodations] was something I wanted to avoid. It can turn into a crutch. Some of my friends and people I know relied on those cushions, like, “Oh, I can get help on this test, even though I don’t need it.” But I kind of resisted [because] it’s not always going to be there. I am my biggest critic, so there's always the lingering guilt. Like if I finish the class with 95%, how much did I really need it? I never know what to blame on [the disability] and what to blame on me as a person.
I think I learned hard work from my parents. My dad probably has an undiagnosed learning disability. He mustered through it, masking it with his own strategies to get around it.
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Both of them have stayed up until god awful hours of the night to help. Especially my mom. I think she proofread every goddamn essay I wrote in high school. I think there were very few teachers who didn't care. There were teachers that understood from the beginning. And there were teachers that were willing to help and making sure what they were doing was actually useful.
Adaptive strategies. I sucked at reading. One of the cornerstones of elementary school is everybody goes around the classroom and reads one paragraph of the book or something, which was literally my nightmare. I was always the one counting like here's the paragraph I'm gonna read and pray to God that I could just memorize it. I experience that even now. If I have to read something in front of a large group, I don't get any meaning out of it. It's just me putting all my brainpower into reading the words. I focus solely on not screwing up. I got very good at avoiding getting into situations, like developing strategies to kind of suppress letting other people see what I was going through. So kind of just like counting ahead just to know where I was reading. That was my patented strategy that I used all the time.
I've kind of become really good at finding strategies for things and ways around it.
Partially because I'm lazy as hell. It is habit at this point. I usually just copy and paste everything into Google and see if something comes up [as spelled incorrectly]. And I have a spellchecking service called Grammarly on my computer. And that was literally the first thing I installed on the computer at work because I run everything through there. I triple check emails usually, for grammar and for spelling. So it's one of those things where like every little thing I do, I do through that. For writing, if I have a mental thought of what I want to say, I tend to adapt it to be a word I know how to spell in a sentence I know how to build. So it will be
82 different than if I just said it out loud. I do those kinds of things constantly. I just intuitively do it all the time to save me time and because someone might say something.
Social implications. There were social implications from the very beginning because people notice when you get pulled out and stuff like that. I kind of became more aware of it and concerned about it because of my experience before I switched to Springfield. And it made me a little more guarded I think. [In high school,] I got really good at kind of dealing with it. I would try not to show up at class at the beginning. For example, my English class, I had determined that I needed to step out for that, so I would just not show up for class at the beginning if we were taking a test. Or I would pop in and tell my teacher and be gone by the start of class. Just so I wasn't here and then leaving, giving people something to question.
Another thing that I had was people sometimes not believing I needed [my accommodations]. Especially if I say I need help on a test, walk out, come back, and get a 98% on a test. If I got a good grade on something, people are almost mad that I got the accommodations. They're like, “You didn't even need this. You got an A.” Sometimes people would see Kurzweil [(i.e., text-to-speech software)] on my screen and the flash drive with the program and be like, “What's that?” And most of the time, you could shrug them off. Most of the time, it was in the middle of class, so part of my reason for shrugging them off or pretending that it wasn't a big deal was timing. I didn't want to go into a lengthy explanation of like, well, I have a learning disability, and make even more of a scene.
I think anyone that says it doesn't have a social impact or that the social part doesn't have any importance to education is just wrong about that. And people definitely deal with it in different ways. Because I was diagnosed early, I internalized it more than some do. And I've seen people I know who deal with it externally or become more kind of disruptive in other ways
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cause that's how they're dealing with it. Like you're a badass, pretending not to care about your grades. That's a way people respond that I've seen before.
Future plans. I'm better off because of [my disability]. It kind of makes you more introspective. I know it affects me. I think it always will. I mean, I was reading a bedtime story to my niece, and I think I misread three or four words in a children's book. And she caught a couple of them. So it will always affect me, even with children's books. That being said, I'm not going to let it control me. I've found ways around it. I don't read the news; I listen to podcasts. I like taking photos. I don’t think I'm going to be the next great American novelist, but I don't feel limited, honestly. There's nothing I can't do as long as I'm willing to put in the effort.
The field I chose is partially because I suck at reading. I’m not a glutton for punishment,
so I'm not going to choose anything reading-based. When I was a kid, [I was] always taking
things apart, destroying things to see how they were made. So I found industrial design and I
was like, yes! One of my favorite things of all time is being able to obsess about a project. You
know when you're working and the world kind of just falls away and you forget about everything
else and you can just kind of work? I love that. Industrial design is art and engineering meshed
together. I still lean more toward the engineering than the art. I try to use that to my advantage.
Let's make things better and more efficient. I enjoy finding things that I can do that I like and
that make an impact. That's what I'm looking for.
People are starting to understand [learning disabilities] and know that it exists. One thing
that has really increased is targeting the stigma around disability; not overcompensating, not
calling us stupid. Let me speak for [my disability]. Let me explain what mine is because
everybody's is different. That's what I care about. I think teachers always benefit from trying to
understand their kids more and thinking way further than what can we give these kids to make
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them get good grades in school. It's more that holistic understanding. But that takes time to
work through because that's the whole point of a stigma, but we have to break through that.
Thematic Analysis Findings
In addition to the findings included in the participants’ narratives, six themes emerged
from the concept coding procedure. Each of the six themes reoccurred in multiple participants’ experiences, but was not necessarily present in all five. Quotes from participants are included to elaborate on each theme.
Strength is gained from disability. All five participants expressed belief that their disability made them a stronger person. Each participant highlighted positive qualities they believed they had gained in part from their experiences with learning disabilities, such as becoming hard-working, demonstrating perseverance, learning independence, or gaining perspective. Gwen described her thoughts about her learning disability saying:
It's also helped me in a lot of ways be better at problem solving, and be more persistent,
and hard-working, and stuff like that. It's taught me those things because of trying to
overcome it and get better at the things that it made harder… It's made me realize that I
am stronger than I think I am and that I can do more and am more capable than I think I
am.
Each participant described having different relationships with their disabilities. Gwen
and Ella discussed how they whole-heartedly embraced their disabilities, speaking of learning
disabilities positively at this point in their lives. Ella, Gwen, Nick, and Reid all included
thoughts on their identities as individuals with learning disabilities and commented on how
difficult it is to separate themselves from their disabilities. Nick talked about his inability to
separate himself from his learning disability, saying, “It's weird to think about. I'll never know
85 for sure who I would have been... But it quickly gets existential.” These four participants repeatedly described the impact their disabilities had on shaping them into their adult selves.
While all participants described the positive impact disability had on their character formation, they also noted examples of the negative aspects of their experiences. Each participant included examples related to academic struggles and frustrations, but Nick and Jess spoke about larger negative components including Nick describing a disability as being
“something wrong with you” and Jess describing the pain and fatigue related to her learning disability.
Teacher understanding can change educational experience. All five participants were included in the general education classroom for the majority of their school day. Nick received pull-out services for occupational therapy; Gwen and Reid had mandated time spent in the resource room; and Ella, Gwen, Nick, and Reid all experienced brief periods of special education pull-out for intervention prior to receiving their diagnoses. However, academic instruction came from the general education teacher for the majority of their K-12 experiences.
Support from general education teachers. Nick had several negative experiences with general education teachers in elementary and middle school, which he believed to be a result of his diagnosis. He described situations where teachers withheld accommodations, graded unfairly, and made rude comments to him. Nick thought these experiences were likely the result of teacher frustration caused by an increase in work due to having a student with a disability and a lack of understanding that he was not intending to cause issues. He felt teachers required him to achieve higher than other students to prove himself capable of the level of work and opportunities that would be assumed for another student. He felt that high school teachers were more flexible, understanding, and willing to work to support him in their classes because he was
86 able to manage his disability almost entirely on his own and had proven himself capable of high- level courses.
Ella’s experience with teachers was generally positive. As a student on a 504 Plan for her dyslexia, she did not see any intervention specialists. She formed a partnership with many of her teachers. Ella described her relationships with them, saying, “They talked to me and figured out what I needed and I talked to them about what I should change and what I should do to make it better. And that worked out really well.” For teachers with whom she did not have a partnership, she said:
I think the most important thing is to talk to them and to put your best foot forward no
matter what because it really helps to break down stereotypes and to make that teacher
understand… I think it’s very important for teachers to see that you’re trying.
Ella felt her teachers responded well to her needs and respected the ownership she took when talking to them about the accommodations she needed.
Gwen and Jess described experiences with general education teachers who were willing to help them be successful in their classes, but were less familiar with what they actually needed to do. Gwen found that the intervention specialists and the general education teachers seemed to be disconnected about what should be done to support students who were fully included in the general education classroom. She described her common practice of introducing herself, explaining briefly how her disability would impact her in the particular class, and letting the teacher know of any accommodations she would need to use. Gwen said, “I find the teachers are a little bit confused as to what they need to do, so I think it just helps to put their mind at ease if I can explain it to them a little bit.” Reid also expressed that is was helpful to have teachers who were prepared for teaching students with learning disabilities. He said, “There are teachers that
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understood it from the beginning. That little bit of knowledge from the beginning, like generally
having a handle on it, helped.”
All participants felt teachers were well-intended, but that a lack of understanding the needs and experiences of students with disabilities sometimes prevented them from best supporting these students in the classroom. However, the participants had numerous teachers with whom they formed positive relationships and were able to have productive conversations about their disabilities and needs. Gwen described the necessity of frequent, open communication, saying:
I think it takes respect on both sides and then just an open dialogue where the student
feels comfortable talking to the teacher and asking for help and the teacher is able to give
feedback on the student's work and say what they feel they should be doing differently.
Just talk between the two and just figuring out what should be expected from the student.
Reid also believed that short, check-in meetings were a productive way to communicate with teachers. He appreciated teachers who were “willing to help and making sure what they were doing was actually useful.” However, he found it seemed be challenging to find a balance between giving a student the resources they need and not over-accommodating. He felt an open
dialog about the accommodations he actually needed was helpful because he received only the
support he needed without the option of using additional accommodations as a crutch. Jess also
believed frequent communication helped her to receive the accommodations she needed. Since
she already had a relationship with her teachers, when she returned to school following her injury
in October, she was able to discuss accommodations directly with her teachers, with the support
of her guidance counselor, and make adjustments for the remaining school year. She spoke
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positively about her experience having open conversations with her teachers as a senior in high
school.
When describing their best teachers, the participants recognized both personal and
teaching characteristics that were most important. Gwen described the best way teachers helped
her, saying:
I think just giving me time. Being patient with me was the biggest thing because I can do
pretty much anything, you just have to give me extra time or be more patient with me
than with somebody else. My mom always jokes that I do everything on my own time.
I'm just slow. So I think that's the biggest thing that a lot of the best teachers I had, who
were most understanding, just gave me extra time. And just pushed me to do my best,
but also realized that it was gonna take me a lot longer to get there.
Multiple participants highlighted teachers who were passionate and took their jobs seriously as
characteristics that were helpful for motivating them to engage in their learning and work hard.
Reid spoke of teachers who called on their students to take responsibility for their learning for the betterment of themselves, while making support available to those who were willing to invest the time. He said:
One would be my Pre Calc teacher because she was hard as shit, but also helpful and
available for teaching. And that was a class that she took very seriously, so everyone else
took it very seriously… But I think it's that you can look up to them as a model… Those
kinds of teachers that you just want to work at a higher level for… I think that's one of
the most powerful things.
The participants also highlighted teachers who took the time to form relationships with and understand their students as the best teachers they had. Gwen talked about teachers who
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were “Involved with their students and very open to them. Very accessible.” Nick described a
high school history teacher who allowed students the freedom to work through assignments at
their own pace with long-term deadlines and who got to know him as a person, instead of as a
student with a disability. When talking about this teacher, Nick said:
I don’t think [my disability] bothered him at all. I think he understood that I'm smarter
than people believe I am. People just look at the disability and think I'm an idiot. Or
that's the assumption they make. He had talked to me enough to know that I'm actually
pretty intelligent… And so he was willing to say, “It's not right to treat Nick that way.
He deserves someone that's willing to help him. He can do much better than the average
student can.” And that's something I always appreciated about him.
Reid also spoke on the benefits of teachers who understand their students, saying:
I think teachers always benefit from trying to understand their kids more. Like who
they're presenting to. I think that's the most beneficial thing because not only do you
understand how to present to your students, but you also have a better understanding of
them. Not a preconceived notion.
All participants placed value on teachers who take the time to get to know their students rather than placing assumptions on them because of disability status, word of mouth from other teachers, or grades. However, they also felt strongly that students are responsible for putting forth the effort to succeed academically and that relationships between students and teachers should be based on mutual respect.
Recognition of signs of learning disabilities. Ella, Gwen, and Reid emphasized the importance of recognition of learning disabilities and early intervention. Ella’s mother was the first to notice signs that she had dyslexia and the school was not in agreement. She and Gwen
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felt that early childhood teachers should be able to recognize early signs of learning disabilities.
Ella said:
I think they should have a lot more information. Just because they need to be aware of
their students, especially at younger ages. Just be aware of red flags and the symptoms of
at least the more common disabilities. Just to help the students. And also letting the
parents know. Communicating with them that, this is what is going on. This is what I
think is happening. Here's what I think are the next steps.
Reid’s diagnosis process began with a teacher recognizing signs and meeting with his parents.
He talked about his experience, saying:
I can say 100% that I would not be the person I am now nor in the position I am in now
without my first grade teacher. Immediately, within the first half of the school year, she
knew I had a learning disability. Because otherwise, I wouldn't have been identified until
fourth or fifth grade because that's when people usually know, is between fourth or fifth
grade.
These three participants felt that, without the early recognition by their parents or teachers, they would have fallen too far behind and not have been as academically successful as they were.
Experiences with intervention specialists. Gwen, Nick, and Reid all received
accommodations and services under IEPs and had experiences with the intervention specialists
that were assigned to their cases. In high school, all three felt they did not have positive
relationships with their intervention specialists. All three felt their disability status sometimes
resulted in lower academic expectations from intervention specialists and that they were treated
as less intellectually capable than they were. All three resisted spending time with their
intervention specialists as a way to more independently manage their disabilities.
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Reid discussed how he felt the special education program at his high school did not
motivate students to become independent. He described how students could take advantage of
accommodations they did not need and use them as a “crutch.” He said there needs to be
changes in, “Understanding what is needed and not going overboard. There's a point where
you're doing too much and you're not doing them any good… I don’t want a person that’s just
going to hold my hand. Some people do, but they need to be told, ‘No.’” Reid described his
relationship with his high school intervention specialist as distant because he wanted to advocate
for himself. He described how he handled his education, saying:
I really used my intervention specialist more as like a fallback. So I would interact
generally with my teachers to tell them, “Look, I have this, this, this, and this [talking
about accommodations].” She usually would send them an email too… So I tried to
handle that interaction myself because I thought that was important… Because then I
think the teacher expects a lot more.
However, Reid felt he did not have a good relationship with his intervention specialist because
she was “very old school” and wanted him to follow her methods for handling accommodations
instead of Reid managing them in ways that worked best for him personally.
Nick explained that he also preferred to handle his accommodations with his general
education teachers instead of going through his intervention specialists. He felt the intervention
specialists had conflicting interests because they were often friends with the teachers and did not
want to “speak poorly of their colleagues.” Nick felt that, when he needed someone to advocate
for him or his needs, he was hesitant to ask the intervention specialist because it often did not
work out how he intended. He felt, if he tried to be self-sufficient, teachers would be more likely to respect him and provide any support he needed and he could cut out the intervention specialist
92 as the middle-man. However, there were cases, especially when he was younger, where teachers saw his requests for accommodations as “challenging their authority” and he needed to “work through the intervention specialist.”
Gwen described that she avoided her high school intervention specialists because of the way they treated her. She said:
I felt like they still treated me like I was a lot younger than I was a lot of the time… My
intervention teachers never really asked me, “What do you need?” or “Are you getting
everything you need?”… So I wish they would have just talked to me like a normal
person, I guess. I feel like that would've been beneficial… I think I would've been able
to build a better relationship with them and would've felt more comfortable talking with
them and coming to the [IEP] meetings and asking for different things.
She also felt her intervention specialists did not understand her desire to keep her diagnosis to herself in social situations. Gwen described avoiding intervention specialists in the hallway because they would approach her in front of peers to have conversations about accommodations or academic progress.
Social implications surround disability. All five participants shared that they wanted to hide their diagnoses from peers at some point in their lives. Not wanting to share about a disability because they felt there was no reason for friends or peers to know about it was the most common response from participants. The participants emphasized that they were not necessarily embarrassed or ashamed of their disabilities, but simply felt it “wasn’t anybody’s business.” In addition, Nick, Jess, and Reid were worried about peers knowing about their disabilities and accommodations because the accommodations could be seen as an academic advantage. Reid described a situation where a classmate challenged the fact that he received accommodations
93 because Reid scored well on tests and assignments. The classmate felt that if Reid received an
“A” on a test or in a class, that he must not truly have a disability and was receiving an unfair advantage in the class. These types of reactions prevented Reid, Nick, and Jess from willingly disclosing their disabilities to peers.
Ella, Gwen, Nick, and Reid shared examples of how teachers, intervention specialists, counselors, or other school personnel were not as subtle about disabilities as they wished they were. They felt their schools tended to focus on academic challenges and solutions for students with disabilities, but not necessarily the social implications of actions intended to accommodate academic challenges. Being called to stay after class to talk to a teacher, leaving during class to go out with an intervention group or to take a test, and receiving call slips to go see the counselor or intervention specialist were all seen as common practices that made the participants stand out in front of their peers. The participants described how other students probably did not notice these instances, but they felt their disabilities were being highlighted. While the participants believed the teachers’ intentions were not to draw attention to their students with disabilities, the participants felt slight changes to these practices could make a difference in the experiences of students with disabilities. A common recommendation from participants was for teachers, intervention specialists, counselors, and other school personnel to be cognizant of how their actions could affect the confidentiality of disability status and impact the social experiences of students with disabilities.
All five participants spoke about how disabilities with no physical or outwardly apparent symptoms, such as learning disabilities, may be considered less valid by others. The participants described the disbelief from peers or friends they experienced when sharing their diagnoses as a point of frustration. Jess was particularly cautious of talking about her disability with peers
94 because she felt others did not consider her learning disability to be valid because it was accompanied by chronic headaches, a symptom many people without disabilities experience.
She explained:
If it's not outwardly apparent, I think it could almost be like the opposite effect. People
don't know about it until you tell them, so they might not think it's an actual disability. I
know that not everyone understands and I know I don't want to sit there trying to get
them to understand that. And I know that the response is going to be better if I avoid
telling them. I don't want to be judged.
The participants discussed the conflict they found with their “invisible” disabilities; they appreciated that it allowed them to choose who they wanted to tell, but felt there was not the same level of initial understanding or confidence that comes with more apparent disabilities.
Support from outside of school plays a role in life and success. Each participant named people outside of school who were important for their success. They all emphasized the support of parents and family members as being critical in their academic and personal achievements. All five participants described close relationships with their mothers and fathers.
Their parents provided the financial resources necessary for opportunities such as psychoeducational testing, private school, outside tutoring, and assistive technology. All five sets of parents helped with homework and studying and were involved in their child’s educational team meetings. In addition, all participants felt they could rely on their parents for emotional support when necessary related to disability or other aspects of their lives.
In many cases, the participants spoke about how their own personal views on their diagnosis and abilities were shaped by their parents. Ella, Gwen, Nick, and Reid all described how their parents instilled in them the importance of hard work and never lowered expectations
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for their academic achievements because of their diagnoses. All five participants had parents
who sought psychoeducational testing independently of their children’s schools and were
committed to determining what could be done to best support their children. All participants
spoke highly of their parents’ involvement with schools, outside supports, and at home and
named their parents as most influential to their success.
In addition, Ella and Jess described how they relied on friends for support their families
could not provide. Jess named two individuals in high school who played a role in her life:
My [religious group] leader. She was dealing with the same kinds of things I did in high
school and she was more of an emotional support. And she would just ask you about that
rather than be as logical like the doctor and what your family wants to help you with. So
having that there definitely helped and was important for me… One of my other best
friends also struggled with a concussion. So just seeing what she went through and
hearing what she said in comparison to me was also helpful.
Ella said that her diagnosis is something she shares fairly quickly with friends as an explanation
for misspellings in texts. She explained that her friends have become a source of support for her
related to her disability where she can speak openly about it and feel encouraged by her friends.
Ella also described how it has become an endearing quality of hers that her friends enjoy:
Everyone has little quirks that throw them off sometimes. It's not just because I have
dyslexia. But when it is a dyslexic thing, my friends like to make fun of it. It's a light-
hearted thing. They know, I know they're joking and they know that they can joke with
me about it.
Ella and Gwen highlighted their Orton-Gillingham tutors as being essential to their successes. They both described their experiences with tutoring as positive. Ella described her
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tutoring, saying, “That’s what helped me succeed.” Both Ella and Gwen did not discount the
fact that many individuals with dyslexia do not have the opportunity to seek outside tutoring
because of the high cost, but felt appreciative for their parents’ abilities to do so and their tutors’
dedication to working with them.
Education policies may not be the best fit for every student. The participants
expressed frustration with various school, state, and federal policies and trends that influenced
their educational experiences. Jess, because she was diagnosed during her senior year and
informally made accommodations with teachers, did not comment on how her schools handled
special education services or accommodations. However, the other four participants talked about
policies that were not the best fit for their needs.
Ella, Gwen, and Reid commented on the benefits of early intervention and felt they
would have been diagnosed too late if their parents had not taken steps to initiate the testing.
They each felt that schools avoid testing for learning disabilities longer than necessary in hope that students who are behind will catch up on their own with intervention. Ella described her thoughts, saying:
I feel like in the school system, it's like you either need help or you don't. You're either
normal or you're special needs. And I kind of fall in the middle of that. It's frustrating
[because] I'm okay in the classroom, but I also need help outside of class to help me do
better. Some kids never get diagnosed or their parents aren't as fortunate to go find
people to test or they have been tested and they are diagnosed, but their parents don't
have the means to go help their child. Which is very sad for me because I have been very
fortunate to have had that opportunity. But there's only so much the teachers can do if
there isn't a 504 or accommodations for them. So all they can do is the best they can and
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get through it, passing by the skin of their teeth, but they're still putting in more work
than the kids that get straight A’s.
These three participants felt that their diagnoses were what started the process of putting supports
in place to help them be academically and personally successful and that individuals who are
diagnosed later, or not at all, are being done a disservice.
IEP meetings were also a common area where the participants felt policies were not as
beneficial to students as they could be. Gwen, Nick, and Reid all described how the formalities
and legalities of IEP meetings prevented the meeting from being a forum where the student, their
parents, the intervention specialist, and teachers could have a conversation about disability.
They each felt their presence was not utilized at the meetings as they were not equal players at
the table discussing their education. The participants felt the more important discussions about how to actually access services and accommodations took place outside of the meetings, directly with their teachers. They each felt students with learning disabilities should more meaningfully contribute to the meetings and begin to advocate for themselves in high school, or earlier.
Contrarily, Ella described the collaborative relationship she formed with her counselor through her participation in her 504 Plan meetings. She attended her meetings as soon as her 504
Plan was developed and she began taking over speaking responsibilities from her parents when she entered high school. Ella felt that, because the meetings required her to speak for herself, directly to her counselor, she was able to develop the self-advocacy skills necessary for a successful transition to college services and received the accommodations she needed in the K-
12 setting. She also felt that the responsibility of working directly with teachers from a young age, with the support of her guidance counselor, was appropriate for her to learn to communicate about her needs with teachers effectively.
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School policies and procedures for accessing special education services were another
point of discussion with many participants. They shared how services such as pull-out time in the resource room, use of assistive technology, or check-ins with the intervention specialist that were well-intended actually prevented them from learning as independently as possible. Gwen shared her view on the purpose of special education, saying:
I think it is to help assist the people who have a learning disability or another form of a
disability so that they can perform to their best of their ability and be comparable to the
students who don't… To even out the playing field.
Nick and Reid spoke about how their accommodations allowed them to perform on a level comparable to their peers without disabilities. However, they both felt policies related to working with the intervention specialist kept them from being as independent as they wanted.
Gwen spoke most emphatically about special education policies. She felt the weekly intervention minutes on her IEP held her back from being academically successful because she had to leave her regular study hall to go to the resource room. She recalled that her high school classes were more advanced than the classes the intervention specialists were trained to work on and that the resource room became a distraction rather than being beneficial. She said:
I hated it so much. It's an awful thing. It was so not useful for me. I got so much less
work done. I could've gotten all my homework done on a normal day in study hall and
I’d get half a worksheet done or something [in the resource room]. I couldn't read in that
class because it was so loud. You'd think the classroom full of 10 to 15 students versus
the classroom of 200 students would be quieter, but, no. I really get fired up about that
one. I really hated that.
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Gwen recognized that she had to attend the resource room to fulfill the intervention minutes
written into her IEP, but felt she did not need academic support from the intervention specialists
and wasted her time in an unproductive setting instead.
While the participants acknowledged that school, state, and federal policies such as
intervention before diagnosis, IEP meetings, and intervention strategies are intended to benefit
students with disabilities, the policies and procedures were not perfect solutions for them as
individuals. They each described how they would have preferred more personalization in the
aspects of special education policy that were applied to their cases such as meeting with an
intervention specialist only as they felt was necessary, having more open discussions at IEP
meetings, or accelerating the diagnosis process when possible.
Disability stigma has changed. Knowledge and perceptions around disability was a
topic all participants spoke about during the study. Ella, Gwen, and Reid all had fathers with
potential learning disabilities that went undiagnosed. These three spoke passionately about how
schools and society have changed since their parents’ generation with regard to the identification
of learning disabilities, the increase in support for students with learning disabilities, and the
change in stigma associated with learning disabilities. Gwen talked about her father’s experience, saying:
He was never good at school. And so, his parents didn't understand why he wasn't good
at school. And it was the 60’s, 70’s, when he was going through school, so they didn't
really do much to help him. So he just felt like he was stupid the whole time. So he just
had to get through by himself. And he didn't want me to feel the same way.
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Ella described the change in support for students with learning disabilities between generations by talking about the emotional response her father had to finding out she and her sister had dyslexia:
Back then, there was no such thing as dyslexia. This is a fairly new concept. And we
already know a lot more about it now than we did then. He was held back in second or
third grade and his teachers told his parents, “It's because he's stupid.” And that crushed
him. And then, finally figuring out what's going on and having two children with the
same thing that you do, it's heartbreaking. And he never wanted me or my sister to have
that same experience. He always wanted me and my sister to love school and love what
we are doing because he never felt that way. And he was always really happy to see that
my sister and I enjoyed school. That helped him a lot.
All three participants shared admiration for their parents who grew up in a time where their academic struggles were deemed to be personal lack of intelligence or effort. They each described feeling driven by what their parents were able to achieve without academic support and grateful for the change in how schools view students with these disabilities.
Ownership of disability label. In addition, each participant recalled different reactions to finding out about their disabilities. Their varying levels of ownership around their disabilities connected to their personal beliefs about disability and the ways their disabilities were impacting them. Ella and Gwen had positive experiences with being diagnosed. They each described viewing the term “disability” as a positive or interesting characteristic of themselves rather than a negative or deficit. Ella described the helpfulness of having a term to describe what she had been experiencing:
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It was kind of a relief, honestly, to kind of understand exactly what was going on with
me… Not just saying, “You need a little help in some areas.” It was, “You actually have
this.”… One in five kids has this. So actually having a name helped a lot.
Gwen’s diagnosis gave her the opportunity to become engaged in her disability through learning about dyslexia and finding ways to improve her reading abilities. She said:
I think it was more of an excitement to know what it was. I was just like, oh that's really
cool. I've always just approached it as this is a very interesting thing instead of being
scared or upset by it or anything. It was always just like, oh that's what it is? Okay, cool.
I want to know more about this and know what to do to help myself.
Nick and Reid also found their diagnoses helpful for describing what was happening, but had additional feelings about what the term “disability” meant about them. Reid faced an internal conflict between having a diagnosis that validated that he “was not stupid” and the assumptions and consequences that come with a disability. He described being hyper-aware of the stigma of disability in society, but that receiving his diagnosis was helpful. He explained:
It was kind of gratifying… gratifying that I'm not crazy. And there's a reason why it
takes me four times as long to read something or I stumble through a paragraph… I
mean, part of it is just acknowledging that you're different, which is both empowering
and terrifying.
Nick described his thoughts on his diagnosis in a matter-of-fact way, saying his disability “is a fact.” While his learning disability is something he accepted over time, the terminology was not as reassuring for him as it was for other people. He discussed his negative reaction to the diagnosis, saying:
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I think it bothered me a lot when I was younger. I mean, I've gotten used to it. But, it
bothered me that there was something that, how do I put it? It bothered me that I wasn't
normal. Or what made me special to everyone else wasn't a good thing. My most
defining attribute is something I have no control over and it negatively impacts me. And
that bothered me for a long time.
For Jess, it was not a positive experience as her diagnosis resulted after failing to recover
from her high school injury. She expressed feelings of denial after doctors told her the concussion had progressed into a learning disability and described how acceptance is an ongoing process for her, saying, “I didn't handle it well. I just… tried to pretend that it wasn’t there.
Once I got to college, I really had to decide that I wanted to handle it the best I could each day.”
However, she spoke extensively on how she feels more connected to others with disabilities now
and has appreciation for how disabilities can positively impact lives.
Appreciation for societal progress and call for greater understanding. Among all
participants, there was a general consensus that negative stigma associated with learning
disabilities has decreased and there is greater understanding of what it means to have a learning
disability than in the past. They believed that experiences for students with learning disabilities
are better now than they were in the past both inside and outside of school. Many of the
participants described how individuals from previous generations who would be diagnosed with
learning disabilities today were described as “stupid” and that the term “disability” was seen as a
negative. The participants believed that in today’s classrooms and society, learning disabilities
have become more commonplace.
However, all participants emphasized that while schools and society have made progress
in redefining what it means to have a disability and the assumptions that are associated with
103 disabilities, there is still progress to be made. Reid discussed the increase in the acknowledgement of learning disabilities, but that stigmas still exist, saying:
It's becoming more accepted. It's like a thing now; you have a learning disability. You
know, it's a thing. You're not stupid… But it still has a stigma with it. I have a stigma
with it that I'm just not as smart as everyone else.
While they believed learning disabilities are more commonly diagnosed and people recognize many specific subcategories, the participants felt society still lacks an understanding of what it truly means to have a learning disability and what the experience is like. When asked what she thought comes to mind when people hear that she has a disability, Ella responded,
“That something going on with me is preventing me from living a full life.” Similar responses were common among other participants. Jess described society’s view on a person with a disability as:
Someone at a disadvantage to others… I think the immediate reaction would be that they
are weaker or lesser off. I would think, you hear disability, you think they need some
accommodation or something for them to live a normal life. They're not normal and you
are.
Each participant spoke on the lack of societal knowledge around learning disabilities and their experiences with incorrect assumptions. The participants felt the increase in recognition of learning disability terminology is a step toward greater understanding and acceptance. However, they often experienced that incorrect assumptions about learning disabilities influenced what others thought of them. Nick described the common reaction he experienced from others when sharing about his disability and the lack of accurate knowledge surrounding learning disabilities, saying:
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I think they feel sorry for us. I think it's partly genuine. I think it's partly they feel
obligated to. And that's probably the most common reaction I see, is pity. I think pity
and then perhaps a little bit of almost stubbornness around it because there's a whole lot
of disabilities that affect people differently… But some people tend to assume the worst.
Or they don't hear as much about the less severe ones, like what I have. So they make a
judgment; they assume other people can't do something. And they're stubborn to let that
go and to understand me and that their first judgment was wrong because they don't know
as much about it as they think they do.
Other participants also found that people in their lives were less willing to understand their personal disabilities because of the stereotypes that accompany diagnoses. Gwen and Ella both experienced stereotypes related to dyslexia, one of the most recognizable learning disability categories, even though their individual forms of dyslexia did not match the assumptions others have about dyslexia. Gwen described her experience and reaction, saying:
I think it's getting better. I think it was actually worse a few years ago, but I think it's
becoming a lot more commonplace to hear about people with disabilities. And there are
so many people coming out being like, “Oh, I'm dyslexic.” or “I have ADD” or whatever
their disability is. People are coming out saying this. Very successful people, coming
out and saying they have these things and trying to help people, where a few years back
that was not common. So I think it's getting less stigmatized, but… the worst is that
people assume they know what is and assume they're an expert when they know nothing
about it. So I always get questions like, “Oh you write everything backwards?” or “Do
you mix up your m's and n's?” And stuff like that is not necessarily completely untrue,
but it's a lot different than that… It's more just ignorance.
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Jess felt strongly about a lack of understanding surrounding her post-concussion learning disability because many people have experience with concussions or know someone who has had a concussion. However, she felt these prior experiences kept others from validating her experience or being willing to redefine their understanding of concussions and learning disabilities that result from injury.
All five participants felt a central message relating to learning disabilities being missed by society is that disabilities are personal; no one definition accurately describes everyone’s experience. They repeatedly emphasized that talking about disabilities and asking respectful questions is the best way to facilitate more accurate understanding. Each participant wanted to communicate that a learning disability does not define a person, but rather is one thing about them.
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Discussion
The first-person stories of individuals with learning disabilities can allow others to gain insight into the complex and personal experience of having a learning disability. Stories and perspectives directly from these individuals provide details of their experiences that may not be present in larger-scale projects where the individual voices of the participants are combined into general findings. The nature of oral history narrative applied in this study allowed for the participants to share candid and authentic thoughts on their experiences, their disabilities, and teachers’ educational practices that allowed for deeper understanding into the experience of having a learning disability. Through the memories and thoughts of this study’s participants, conclusions can be drawn that apply to personal understanding and perceptions of learning disabilities, professional practice of supporting students with learning disabilities, and research related to individuals with learning disabilities.
The Learning Disability Experience
The central research purpose of this study was to determine what the stories told by individuals with learning disabilities would reveal about the experience of having a learning disability. Overall, the data illustrated how the learning disability experience is very personal
(Reiff, 2004). Each participant identified with their disability, and the label of learning disability, in a different way and each experience was unique. In many ways, the participants felt their experiences were similar to the experiences of their peers without disabilities. Outside of learning disability status, the participants felt they had many more commonalities than differences with their peers without disabilities. However, each participant articulated concerns related to the lack of understanding of learning disabilities by teachers, peers, and society as a whole based on their past experiences. The findings of this study echo the need expressed by
107 other researchers (e.g., Block & Weatherford, 2013; Cameron, 2014; Connor, 2007; Mazher,
2012; Reid & Button, 1995) for research that helps change negative stigma surrounding disabilities as well as correct assumptions about learning disabilities by giving voice to individuals with learning disabilities.
Though the experience of having a learning disability is personal and each participant’s story was different, there were commonalities between the participants’ experiences. The participants all shared stories of frustration and struggles associated with their learning disabilities, suggesting that disabilities are likely accompanied by challenges (Connor, 2007;
Goldberg et al., 2003; Rodis et al., 2001). The participants shared examples of personal, social, emotional, and academic challenges as part of their experiences. It is likely that other individuals with learning disabilities experience some form of struggle as well. However, some individuals with learning disabilities may find positives that come from disability. A common finding among the participants in this study and in previous literature was the feeling that overcoming challenges related to disability led to increased personal strength and motivation
(Goldberg et al., 2003; Rosetti & Henderson, 2013; Wegner, 2017). The attitudes of the participants in this study were largely positive, suggesting that at the time of the study, they were confident their experiences prepared them to be personally and professionally successful. Each participant had a positive outlook when describing the goals they had set not only for their careers, but also for their lives. When talking about the roles their disabilities played in setting goals and developing plans for how to accomplish them, they described that while disability may have been a considered factor in planning for their lives, it was not a hindrance that prevented them from having the meaningful and successful lives they desired. This study suggests that
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though disability may play a role in the personal and professional futures of individuals with
learning disabilities, many of these individuals are able to plan for and achieve successful lives.
As is consistent with previous literature, the findings of this study suggest that individuals
with learning disabilities may go through a period of determining who they are as a person with a
learning disability (Higgins et al., 2002). For some, this experience may lead to accepting the
disability, embracing the disability, and/or separating themselves from stigma associated with
disability (Connor, 2007; Higgins et al., 2002; Reiff, 2004; Wegner, 2017). While most of the
participants described accepting their disability and seeing it as a part of what made them the
adults they became, they all described acceptance as a process. Some participants felt they had
already gone through the process of accepting their disability, while others were still working on
understanding their disabilities and how their disabilities fit into their lives. The participants’
personal stories of going through their acceptance processes suggests that understanding of
disability and how it impacts someone personally may be essential for acceptance of disability
(Higgins et al., 2002).
Personal relationship with disability. From the participants’ perspectives, we can better understand how each person’s relationship with disability is different (Rothman & Cosden,
1995). For some, their disability experience may begin with recognizing differences between
their peers and themselves, even if they cannot understand what the differences are. Many of the
participants felt a sense of relief when they were diagnosed with a learning disability because
they believed what they had been experiencing was validated by the label. In addition, having a
diagnosis may create a sense of community for individuals with learning disabilities; knowing
there are others who experience similar differences may be comforting. Therefore, disability
diagnosis may not be a negative experience. Similarly, individuals with learning disabilities may
109 not view their disabilities negatively even though stigma in society around learning disabilities is often negative.
Though the participants’ descriptions of their relationships with their disabilities varied, they all felt knowledge of their disabilities was essential, especially as they became older. Some felt deep appreciation for their disabilities and how their disabilities impacted their lives. Others described a “love-hate” relationship where they experienced moments of thankfulness for their disabilities, but also moments of bitterness toward their disabilities. One participant described a negative relationship with her disability; however, her diagnosis was recent and she experienced related physical pain as well. Though each perspective on disability was unique, the findings showed that all participants valued knowledge about their specific disabilities and how they were individually impacted by the disability. This study’s findings are consistent with previous literature on the importance for individuals with learning disabilities to understand how their disabilities impact them to be able to proactively and effectively work through challenges related to disability (Gerber et al., 1996; Reiff, 2004; Wegner, 2017). This study suggests that when an individual with a learning disability understands what their disability is, how it impacts them, and is able to plan for how to accomplish their goals, they may be more likely to experience positive outcomes. With time, information, experience, and maturity, personal understanding of disability may be beneficial for individuals with learning disabilities.
Factors that shape educational experiences. This study’s findings illustrate the complex web of factors that can shape the educational experiences of students with learning disabilities. First, learning disabilities, by definition, impact the academic learning of students
(IDEA, 2004; Ohio Department of Education, 2017). The participants’ stories included periods of struggle, especially prior to intervention, where they fell behind their peers without disabilities
110
academically, experienced lower levels of self-concept, and other challenges. It is likely that others with learning disabilities also experience periods of struggle in these areas. Based on the participants’ stories, it seems that developing an understanding of the impact of the disability and recognizing personal strengths are necessary for overcoming challenges related to learning disabilities (Gerber et al., 1996; Wegner, 2017).
This study’s findings also highlight the potential of individuals with learning disabilities to use personal motivation to increase their academic success. Though the participants faced challenges related to their educational experiences, they all were able to set and achieve high goals. The participants described their dedication to finding instructional strategies, study routines, and other methods for academic and personal success that worked for them individually, suggesting that their personal determination was a factor that shaped their successful educational experiences. In addition, their parents allowed them to take some level of ownership of their learning and planning for their futures. The participants felt opportunities to set goals and make decisions about their educational plans allowed them develop the self- advocacy skills necessary to successfully transition to college and adulthood, suggesting the benefits of teaching students with learning disabilities to be self-determining (Trainor, 2005).
In addition to challenges caused by learning disabilities and the potential of personal determination, support systems seem to influence the educational experiences of students with learning disabilities. The benefits of positive support systems for students with learning disabilities has been discussed in previous literature as well (e.g., Rodis et al., 2001; Rosetti &
Henderson, 2013). It seems the role of parents and families in creating positive discussion around learning disabilities can influence students’ experiences in a beneficial way (Goldberg et al., 2003). The participants described relying on their parents to provide resources for academic
111
improvement, support related to dealing with their disabilities emotionally, and help adapting to
other challenges they face in school.
In addition to support from family members, students with learning disabilities seem to
benefit from teachers, tutors, and other academic figures who form caring and understanding
relationships with their students. The participants mentioned specific teachers who encouraged
and supported them and the roles they had in their academic and personal successes. The role of
peers in supporting students with learning disabilities can also shape these students’ experiences.
While this study’s findings are consistent with previous literature that discusses how peer
support can positively influence experiences (LaBarbera, 2008; Milsom & Glanville, 2010;
Rosetti & Henderson, 2013), the findings of this study provide potentially important information
about the participants’ perceptions about the role of peer supports. The ability to share, or not share, disability status with peers may be important to individuals with learning disabilities.
Self-disclosure was an important step for some of the participants; they appreciated being able to choose who to tell about their learning disabilities. Some of the participants’ peers had limited knowledge of their disability; in these types of situations, supportive peer relationships may exist without knowledge of disability status.
Overall, support systems varied among the participants, suggesting that individuals with
learning disabilities are likely to experience different levels of support from different groups in
their lives. Some participants relied on their parents for the majority of the support they needed.
Others felt comfort confiding in friends. Some participants gained confidence from teachers or
tutors who believed in them and their abilities. Many of the participants had supportive
relationships in multiple areas. The findings of this study imply that supportive relationships,
112 wherever they are formed, may be influential in the educational experiences of individuals with learning disabilities.
Though the findings of this study describe the specific experiences of five individuals with learning disabilities, it is important to note how their experiences were shaped by numerous people, factors, and experiences. It is likely that the experiences of others with learning disabilities are as complex as the experiences of the participants in this study. Consideration of the multitude of factors that can shape students’ experiences may lead to better understanding of these individuals’ experiences and more individualized methods for supporting them. When discussing the educational experiences of students with learning disabilities, it is necessary to consider their experiences from a holistic perspective. When considering how the experiences and perspectives of individuals with learning disabilities are shaped, it is important to consider personal characteristics, level of disability impact, personal identification with disability status, family and environmental influences, individual emotional tendencies, social influences, and other factors that can impact learning and educational experiences (NJCLD, 2011).
Recommendations for practice from individuals with learning disabilities. Through this study, the participants made recommendations for improved practice. First, the participants’ stories included gratitude for teachers and other academic personnel who were empathetic, understanding, and took the time to form relationships with their students. It is likely that students with learning disabilities feel better understood by teachers who emphasized understanding them as a person first instead of making incorrect assumptions or lowering expectations based on disability status (Reid & Button, 1995). It seems students with learning disabilities appreciate patient teachers who recognize that they may need more time, flexibility, and creativity to be academically successful. Also, the participants felt they benefitted from
113
teachers who did not lower expectations based on disability status alone; they felt high academic
and personal expectations allowed them to rise above the assumptions that others may have had
of people with disabilities. However, because all individuals with learning disabilities may not
have the same abilities (NJCLD, 2011), it is also essential for teachers to recognize student
capabilities on an individual basis, finding the balance of high, yet reasonable, expectations.
In addition to understanding the learning needs of their students, the participants’ stories
also included the recommendation that teachers leave space for students to learn independence
and self-advocacy skills. This finding is consistent with the literature as practicing independence and self-advocacy skills have been highlighted as ways to teach individuals with learning disabilities to be self-determining and be prepared for academic and personal success in the K-12
setting as well as later in life (Rosetti & Henderson, 2013; Trainor, 2005). With time,
information, and maturity, some students with learning disabilities may understand their
disability and its implications for their lives better than anyone else. This level of understanding
could make them contributing members of the educational team, ready for the increased
responsibility of managing their disability. Though, some students may be more ready or
interested in managing their disabilities than others; some students with learning disabilities may
desire intervention specialists and teachers who are flexible in working with them to develop
self-advocacy and independence skills.
Overall, the findings of this study emphasize the personal nature of the learning disability
experience. Each participant’s story and perspective gives insight into how they have not only
experienced having a disability, but also teachers’ and society’s perspectives of learning
disabilities. This study suggests that deeper understanding of the educational experiences of
individuals with learning disabilities may help practitioners and researchers to continue to best
114 support these students inside of the classroom and to break down incorrect assumptions about those with learning disabilities. While conclusions about the experiences of the entire population of individuals with learning disabilities cannot be drawn from this study, the voices of the participants can help to continue conversations about learning disability experience.
Limitations
There are a number of limitations of this study. First, and likely most prominent, is the lack of generalizability of the study’s findings (Creswell, 2013; Creswell, 2015). While the restoried narratives and analytical findings may help special education practitioners and researchers to better understand the complexity of each participant’s experience, the findings cannot be generalized to individuals with learning disabilities outside of the five participants who were included in the study (Maxwell, 2013). However, aspects of the findings likely apply to the experiences of other individuals with learning disabilities (Maxwell, 2013), leaving the potential for researchers and practitioners to draw inferences from the findings based on their own personal and professional experiences with individuals with learning disabilities.
In addition to the small sample size, the demographics of the participants included in the study are not representative of all individuals with learning disabilities. Although there was no discrimination placed on race, class, or any other factor during recruitment, all participants were
Caucasian, from suburban areas of Ohio, with parents who were available for academic help and personal support and able to provide financial resources. Also, due to the recruitment procedures of this study, all participants had successfully graduated from high school, met requirements for college admittance, and enrolled in a four-year college. Each participant was determined and independent; all were academically and personally successful during their K-12 experiences and seeking professional and personal success in the future. The experiences and perspectives of
115 individuals with learning disabilities from other backgrounds as well as individuals not attending college may provide additional insight.
In addition, it is impossible to completely eliminate researcher bias in narrative inquiry
(Creswell, 2013). As the researcher was the one to restory the participants’ oral histories into narratives, bias was present in how each story was shaped. Bias was also present in the construction of interview questions as well as while interviewing each participant through the focus on topics relevant to the purpose of this study. Though the researcher was mindful of bias throughout the study, bias likely influenced this study at multiple points (Creswell, 2013).
Another limitation is the potential for inaccuracy in the participants’ stories. When relying solely on one person to retell a story, there is the possibility that the data may become distorted. It is possible an individual may not be able to tell the real story of what happened for a variety of reasons (Creswell, 2015). Individuals are only truly able to understand their own perspective and perception of events, which can influence the way a story is retold (Creswell,
2015). Also, stories can become distorted over time; when participants recall events, aspects of the experience may be lost or reinterpreted (Creswell, 2015; Lieblich et al., 1998; Ritchie, 2003).
People are more likely to remember events that made significant impacts on their lives, especially negative events (Reiff, 2004); therefore, it is possible that the participants may have overemphasized negative or traumatic experiences when retelling their stories. There is also the possibility that the participants adjusted their stories to fit their audience–the researcher and this project (Gubrium & Holstein, 2009). However, the stories represented what the participants believed to be true, making them the most accurate data available for studying perspectives of the lived experiences of the participants (Creswell, 2015; Ritchie, 2003).
116
Implications for Practice
The findings of this study emphasize the importance of teachers, parents, and other support personnel to continue to have high expectations for students with learning disabilities, while providing support and considering their individual abilities. The participants of this study were all highly-successful students and individuals, illustrating the potential for students with learning disabilities to achieve academic and personal goals. It is important for teachers to encourage students with learning disabilities to pursue their interests and challenge themselves academically and develop expectations based on individual students’ capabilities and not solely on disability status.
Teacher understanding of students and willingness to listen to their perspectives is valuable for the success of students with learning disabilities. Individuals with learning disabilities in this study acknowledged and appreciated teachers who formed personal relationships with them and were dedicated to supporting their students to achieve their academic and personal goals. Teacher consideration of the social and emotional impact of their subtle teaching actions, such as calling out students to stay after class or announcing that a student may leave to take an exam, can also be important for improving the experiences of individuals with learning disabilities by reducing social barriers caused by highlighting disability status of students who prefer it remain confidential. Likewise, sensitivity to how learning activities, such as popcorn reading or solving mathematics problems in front of the class, can highlight disability status and cause social concerns for students with learning disabilities can help protect the confidentiality of students with learning disabilities.
In addition to continual understanding and high expectations for students with learning disabilities, the findings of this study suggest the importance of supporting students with learning
117
disabilities in developing independence. This study’s findings emphasize the necessity that
individuals develop the self-advocacy skills that will be necessary for communicating about their
disability and related needs for life outside of the K-12 setting. As students with learning
disabilities grow older and more mature, teacher-student partnerships that are based on mutual respect can help students to take more ownership of their disability and education and be prepared for post-secondary experiences. Encouraging students with learning disabilities to be active in planning for their education through discussion of accommodations and services during
IEP or 504 Plan meetings can help students to become effective self-advocates.
Implications for Research
Larger-scale projects that include more participants with learning disabilities will increase the generalizability of the findings of this study as well as expand the body of literature that focuses on understanding student experiences. Quantitative studies that examine the applicability of this study’s findings to larger samples of individuals with learning disabilities can lead to better understanding of what students with learning disabilities experience as well as the factors that impact their educational outcomes. More qualitative studies that continue to give voice to individual students whose stories provide detailed insight into their lived experiences are also necessary for more holistic and in-depth understanding of the experience of having a learning disability. Studies that include the educational experiences of individuals with learning disabilities from other races, cultures, ethnicities, social classes, and geographic regions are necessary to more completely understand the learning disability experience. In addition, the experiences and perspectives of individuals who are less academically successful, who have negative feelings toward education, who are younger, or who may not yet have come to
118 understand their disabilities are critical for exploring additional ways to support students with learning disabilities in schools.
Continued research from the perspectives of individuals with learning disabilities is needed to give voice to a population that is traditionally spoken for in academic writing (Mazher,
2012; Reid & Button, 1995). Projects that continue the conversation about what students with learning disabilities experience in the classroom may further improve outcomes for individuals with learning disabilities and promote personal and academic success for these students. In addition, collaborative projects that include individuals with learning disabilities, their teachers, and their families could promote discussion on the educational experiences of learning disabilities and the factors that influence success. There is also a need for both practitioners and researchers to continue to have conversations with individuals with disabilities about their experiences and perspectives to further reduce stigma and assumptions around disability and disability experience (Block & Weatherford, 2013; Mazher, 2012; Rosetti & Henderson, 2013).
Conclusion
Learning disability is the largest disability category of school-aged students and individuals with learning disabilities make up a substantial portion of the population (Cortiella &
Horowitz, 2014; U.S. Department of Education, 2017). It is not only essential that they are academically and personally successful, but that researchers and practitioners have accurate understandings of what learning disabilities are and how they can impact the educational experiences of students. Learning disabilities can often impact more than academic challenges and successes; consideration of factors such as social implications, personal characteristics and confidence, and disability identity should also be included in developing strategies to support these students. Research that gives voice to individuals with learning disabilities can continue
119 the dialog about how to best support these students not only for academic success, but for the meaningful and successful careers they desire. More holistic understanding of individuals with disabilities can increase awareness of learning disabilities and decrease negative stigma associated with disability status.
120
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Appendices
Appendix A: Project Information Flyer
Understanding the School Experiences of Individuals with Learning Disabilities: A Narrative Perspective
Are you a student at UC who was diagnosed with a learning disability prior to college? If yes, please participate in a study to help us better understand the educational experiences of students with learning disabilities! This study has two goals. 1. To better understand the educational experiences of students with learning disabilities while in kindergarten through twelfth grade. 2. To gain your recommendations for teachers and other school personnel that could improve the educational experiences of students with learning disabilities.
Individual interviews focused on hearing about you, your experiences in school, and your ideas about education will be used. Each interview will be video recorded and last approximately 1 hour. Selected participants will participate in 10 interviews. Selected participants will receive a $50 VISA gift card following completion of the study. Please contact Samantha Marita at [email protected] if you are interested.
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Appendix B: Project Consent Form
IRB #: 2017-0937 Approved: 3/2/17
Consent Form for Research University of Cincinnati
Department: School of Education, Special Education Principal Investigator: Samantha Marita
Title of Study: Understanding the School Experiences of Individuals with Learning Disabilities: A Narrative Perspective Introduction: You are being asked to take part in a research study. Please ask questions about anything that you do not understand.
Who is doing this research study? The person in charge of this research study is Samantha Marita of the University of Cincinnati (UC) Department of Special Education.
There may be other people on the research team helping at different times during the study.
What is the purpose of this research study? This study has two goals: 1) To better understand the educational experiences of students with learning disabilities while in kindergarten through twelfth grade. 2) To gain recommendations for teachers and other school personnel that could improve the educational experiences of students with learning disabilities.
Who will be in this research study? Three individuals will take part in this study. You may be in this study if • You are a student at UC and have a learning disability diagnosed prior to college. • You are able to meet with the researcher for weekly interviews. • You are willing to share with the researcher about your educational experiences including positive and negative aspects of your experiences.
Taking part in this research study is not part of your school requirements. Refusing to be in the study will not affect the support or services you receive at UC. You will not be offered any special school-related benefits if you take part in this study.
What will you be asked to do in this research study, and how long will it take? You will be asked to complete the steps below. The information you provide during the interviews will be video recorded. 1. Participate in 10 weekly one-on-one interviews lasting approximately 60 minutes about
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your experiences in school from kindergarten through twelfth grade. The conversations will be video recorded. If you do not want to be video recorded, you should not participate in this study. 2. Review the researcher’s synthesis of data to validate accuracy of findings based on your experiences.
Are there any risks to being in this research study? There are no known risks associated with this study. Video recordings will be used for research purposes only and will only be seen by members of the research team. Video records will not be made publicly available or shared with anyone outside of the research team.
Are there any benefits from being in this research study? Participants will receive a $50 VISA gift card following conclusion of the study as reimbursement for time.
Will you have to pay anything to be in this research study? You do not have to pay anything to be in this study.
What will you get because of being in this research study? You will receive a $50 VISA gift card following conclusion of the study. If at any point, you choose not to participate in the study, you will not receive any payment.
Do you have choices about taking part in this research study? If you do not want to take part in this research study, you may choose not to participate. At any point during the study, you may choose to no longer participate. In this case, any interview data collected will be destroyed and not included in the study.
How will your research information be kept confidential? Information about you will be kept private. Pseudonyms will be used to label all data. Only the researchers will have access to your data. Research data will be stored in a locked file cabinet in a locked office. After the study write-up has been accepted, all data will be destroyed by shredding of physical files and deletion of electronic files. The data may be published. Participants will not be identified by name at any time.
Agents of the University of Cincinnati may inspect study records for audit or quality assurance purposes.
The researcher cannot promise that information sent by the internet or email will be private.
What if you have questions about this research study? If you have any questions or concerns about this research study, you should contact Samantha Marita at [email protected].
The UC Institutional Review Board reviews all research projects that involve human participants to be sure the rights and welfare of participants are protected.
If you have questions about your rights as a participant or complaints about the study, you may
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contact the UC IRB at (513) 558-5259. Or, you may call the UC Research Compliance Hotline at (800) 889-1547, or write to the IRB, 300 University Hall, ML 0567, 51 Goodman Drive, Cincinnati, OH 45221-0567, or email the IRB office at [email protected].
Do you have to take part in this research study? No one has to be in this research study. Refusing to take part will NOT cause any penalty or loss of benefits that you would otherwise have.
You may start and then change your mind and stop at any time. To cancel participation in the study, you should tell Samantha Marita at [email protected].
Agreement: I have read this information. I want to be in this research study.
____ YES, I agree to be in this research study.
____ NO, I do not want to be in this research study.
Your Name (please print) ______
Your Date of Birth ______(Month / Day / Year)
Your Signature ______Date ______
Signature of Person Obtaining Consent ______Date ______
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Appendix C: Demographics Sheet Demographic Information Age: ______Prefer not to answer
Gender: Male Female Other: ______Prefer not to answer
Ethnicity: White Hispanic or Latino Black or African American Native American or American Indian Asian Hawaiian/Pacific Islander Biracial Other:______Prefer not to answer
What pronouns do you use for yourself? he/him/his/his/himself she/her/her/hers/herself they/them/their/theirs/themselves other: ______
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Hometown: ______
College Major: ______
College Level: Freshman Sophomore Junior Senior Fifth Year Other: ______
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Appendix D: Interview Questions
Interview 1 – General Information and Getting to Know You
• Demographic Information Sheet • Reminders: I am here mostly to listen. What you say is what I want to hear, even if you aren’t sure. I am not looking for a “right” answer. Say what you think, even if you aren’t sure you are answering the question. Please include stories that provide examples for your answers. If you think of something to add to a previous question, please say something. • Ask for clarification if you don’t understand or have any questions. • I have a tentative list of questions for each interview. As we talk, some may need to be cut or adapted based on what you say. I also may ask questions that are not on my sheet. Any pauses in between responses will just be me processing and determining what to ask next. • I will try to remain as unbiased as possible. This will look like I am just nodding to most of what you say to encourage you to keep talking. • Are you okay with me referring to your diagnosis as being a “disability?” • Are you okay with me referring to you as someone with a disability?
• Tell me a little bit about yourself. Anything you would want people to know to get to know you, including interests and hobbies, personality traits, family details, etc. • What are you studying and why? • Why did you choose UC? • What do you want to do after college? • What qualities or characteristics do you have that will make you successful in your intended career? • What have been your favorite classes in college so far? • What have been your biggest challenges in college so far? • When/why did you disclose with DSO? • How was the disclosure process for you? • Did you have any worries or concerns about coming to UC as a student with a disability? • Do you choose to disclose with your professors at UC? Why? • How do your professors and other university personnel respond to you as a student with a disability? • Do you choose to disclose with all professors or are you selective? • Is there anything you wish you had known coming in to college that you have figured out now? • What kinds of activities or groups are you involved in? • At this point in your college experience, what is your level of confidence that you will be successful at UC and in your specific program? • Is there anything I have not asked that you would like to share about?
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Interview 2 – Diagnosis/ Understanding of Disability
• When did you find out you had a disability? • Who first thought you may need to be evaluated? • Were you diagnosed with a specific type of learning disability? • What was the process of your diagnosis? • Did you think you had a disability prior to diagnosis? • What was your reaction to being diagnosed? • Did any emotional response come with your diagnosis? • How did your family respond to your diagnosis? • What was your school experience like prior to your diagnosis? • How did you anticipate your disability would influence your educational experience? • Did you develop any coping strategies for dealing with the diagnosis with a disability? • Throughout the diagnosis process or after, did you have someone who checked in with you to see how you were doing emotionally? • Would you say you have accepted having a disability? • What are some words you would associate with having a disability? • Looking back on being diagnosed, is there anything that could have made the diagnosis process/transition/acceptance of the disability easier for you? • Were there any aspects of diagnosis/ learning about your disability that went well and you would recommend for other students? • Is there anything I have not asked that you would like to share about?
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Interview 3 – Special Education Services, Accommodations, and Educational Experience
• Tell me about how you learn best. • What influence did your disability have on your learning? • How was this different from what you experienced prior to your diagnosis? • What special education services or accommodations did you receive as a result of your diagnosis? • What was the process of learning about special education services and accommodation like? • Who were the key players in helping you to understand the services you would be receiving? • Who were the key players in delivering the services you received? • Tell me about your typical day in school. • Do you feel that the services you received brought you to an equal playing field with your peers? • What were your relationships with the intervention specialists assigned to your case like? • Did the supports you needed change over time? • What level of ownership did you feel you had over the services and accommodations you received? • Did you feel teachers had different expectations for you as a student with a disability? • Did different teachers have different expectations for you (gen ed vs sped)? • What strategies used by teachers were most effective for you as a student with a disability? • What strategies did you use for yourself? • Describe for me the best teacher you ever had. • What could have been better for you in terms of being supported for your disability to be educationally successful? • Is there anything I have not asked that you would like to share about?
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Interview 4 – Social Implications and Experiences
• Did your diagnosis lead to any social changes? • To what extent were your peers aware of your disability? • Did you feel peers were supportive of you as you went through your diagnosis? • Did you feel a difference between yourself and your peers? • Did you feel comfortable sharing about your disability with peers? • Were you ever separated from your peers during the school day? • When you chose to tell friends or peers about your disability, what was their reaction? • Did you feel peers or friends treated you differently after finding out about your disability? • Did any of your services or accommodations cause you to stand out in front of your peers? • What do you think your peers felt about you as a student? • Did you have any social challenges as a result of your disability? • Were there any social changes for you as you and your peers became older? • What emotions do you associate with peers knowing about your disability? • Have you ever felt that you “missed out” on anything socially because of your disability? • Do you think other people recognize or understand what you are going through in terms of having a disability? • Did schools do anything socially for you in terms of your disability? • Does the school have a responsibility for a student’s social experience? • Did you face any social challenges throughout the school day? • How were you treated by your classmates? • Did your disability give your peers a certain impression of you? • Is there anything I have not asked that you would like to share about?
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Interview 5 – Individualized Education Program/504 Plan Meetings
• At what point did you begin attending IEP/504 Plan meetings? • What was your knowledge of the meetings prior to being allowed to attend? • Describe your perspective at an IEP/504 Plan meeting. • What was your role in your IEP/504 Plan meetings? • In your opinion, what is the point of the meeting? • To what extent were special education policies and procedures explained to you? • Do you feel like you understood what was happening during IEP/504 Plan meetings? • Did your IEP/504 change over time? • What was the level of communication between family and school personnel at the meetings? • Were your parents always in agreement with the IEP/504? • Did they always sign the document? • To what extent were was the IEP/504 Plan agreed upon during the meeting implemented in your actual educational experience? • Did you find transition planning to be helpful? • Did your guardians ever share their perspectives on the meetings or their outcomes with you? • What do you think the school personnel thought of your parents? • How can schools make students with disabilities part of the team in terms of planning for their education and future? • What should IEP/504 Plan meetings be like? • Is it important for the students to be at the meeting? • Is there anything I have not asked that you would like to share about?
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Interview 6 – Identity as Someone with a Disability
• Do you identify as someone with a disability? • When you think about yourself, how does your disability fit in? • How has having a disability shaped your view of yourself? • On a scale from 1-10, how does your disability impact your life? • On a scale from 1-10, how significant is your disability in describing yourself? • In what situations do you feel it is important for others to understand your disability? • How often do you think about the fact that you have a disability? • What should schools be responsible for doing for students with disabilities? • What was the process of accepting you have a disability like for you? • How would you help someone else accept that they have a learning disability? • What is the worst part of having your disability? • What is the best thing about having your disability? • How do you think the general public views people with disabilities? • How should society view people with disabilities? • How has having a learning disability impacted your confidence over time? • How has having a learning disability impacted your self-esteem over time? • Does it make more sense for you personally to describe your disability as a learning disability or a learning difference? • In general, how has your identity changed over time? • Should schools have a role in helping students determine their identities? • Is there anything I have not asked that you would like to share about?
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Interview 7 – Stigma of Disability
• When you hear the word “disability,” what comes to mind? • What do you think society thinks when they hear the word disability? • Do you think there is a stigma on disability? • Have you had any personal experiences that would lead you to believe there is a stigma on disability? • Have you ever had an experience where someone made assumptions about you because you have a disability? • How do you view people with disabilities? • How should society view people with disabilities? • How should society view people with learning disabilities? • Do you ever refrain from telling someone about your disability for fear you will be treated differently? • Have you ever had an experience with someone that led you to think disability was a negative thing? • Do you think schools play a role in how society views people with disabilities? • What can schools do better to promote a society of understanding of people with disabilities? • Is there anything I have not asked that you would like to share about?
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Interview 8 – Potential Recommendations for Practice
• How would you explain yourself as a student to a teacher? • How would you explain your disability to a teacher? • What did teachers do well to help you be successful as a student with a disability? • What could have been done better? • What did the school/district administrators do well to help you be successful? • What could have been done better? • Did you ever encounter issues with school/district/state policies that prevented you from being as successful as you could be? • What does special education mean? • What do you think about the role of special education in the public education system? • What do you think it means to be successful as a student? • What recommendations would you have for teachers with students with learning disabilities? • What do you think needs to be changed for students with learning disabilities to be as successful as possible? • Is there anything I have not asked that you would like to share about?
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Interview 9 – Going forward as someone with a disability
• How do you define success in academics? • How do you define success in life? • How do you anticipate your disability influencing your time in college? Or how has it already impacted you? • Does your disability have an impact on your life outside of academics? • Has the impact your disability has on your life changed over the years? • What advice would you give to other student with a learning disability who wants to attend college? • What can teachers and other school personnel do to ensure that other students with disabilities are able to attend and be successful in college? • Did having a disability influence your plans to attend college or your chosen program of study? • How do you anticipate your disability will impact your life when you are no longer in an academic setting? • Do you feel limited in what you can accomplish in your life because of your disability? • What people have been important for ensuring you are successful in life? • What about you has made you successful in your life so far? • Would you choose to get rid of your disability if you could? • What do you want people to know about having a disability? • What did your educational experiences contribute to preparing you for your future beyond school? • What could your schools have done better to prepare you for your future beyond school? • Is there anything I have not asked that you would like to share about?
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Interview 10 – Final Questions and Wrap Up
• Did your family provide any additional educational services for you? • Did you have family support for educational needs outside of the school day such as help with homework or studying? • Did your family provide emotional support related to your disability? • Do you feel like your disability affected your ability to receive information, express information, or engage with information? • How much do you think teaching should be informed by the needs of students with disabilities? • When is it appropriate for students with disabilities to spend time in a location separated from their classmates without disabilities? • Do you think schools are prepared for kids who need to learn differently? • Did you have any people who you felt mentored you, inspired you, or had a major impact on your life? • Have you ever felt embarrassed, ashamed, or any other negative emotion when thinking about your disability? • Describe a good teacher versus a bad teacher. • Do you think your general education/special education teachers always had your best interests in mind? • What was your proudest moment in school? • What was your worst moment in school? • Was there an age/grade/time period that was best for you? • Was there an age/grade/time period that was worst for you? • Looking back at your educational experience prior to college as a whole, how would you describe it? • What does it mean to you to have a disability? • How would you describe yourself to someone who has never met you? • What message would you like to send to others about disability or people with disabilities? • How to you plan to change or impact the world? • Is there anything I have not asked that you would like to share about?
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