Stanford University

Graduate School of Education

UNDERGRADUATE HONORS

Engaging Children in Discussions of Disfigurement and Disability

Anna Gabriella S. Casalme

May 2015

A Thesis in partial fulfillment

Approvals:

Honors Program Director: _______________________________________

Honors Advisor: _______________________________________

This study examined children's engagement with Wonder by RJ Palacio and explored the

ways in which the children's literature could be used to promote critical, reflective and broad

discussions of complex themes, such as disfigurement and disability, among young children.

Eight students between the ages of 9 and 12 were assigned the reading of Wonder. They

participated in an individual interview followed by a group interview. Interviews were coded

with the objective of classifying each participant by type of engagement and examining

references to specific themes of appearance, bullying, disability and disfigurement. Results

indicated that children differentially engage with Wonder: four were engaged with both the novel

and discussion, two were engaged with only the novel, one was engaged with only the

discussion, and one was engaged with neither. Some children are capable of using Wonder to

inform their own real-life experiences of and encounters with bullying, disfigurement and

disability and/or discuss these social issues beyond the scope of the novel. Furthermore, some

children are not only capable of discussing Wonder through critical lenses such as disfigurement

and disability studies, but doing so adds crucial nuance to their simplistic initial interpretations of

the novel and its themes.

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 Acknowledgements

I think there should be a rule that everyone in the world should get a standing ovation at

least once in their lives.

—R.J. Palacio, Wonder

Thank you to the eight kids who spent a day out of their weekend to share their

invaluable thoughts. Each and every single one of you showed me that we have much to learn

from the perspectives of children. Thank you to Professor John Willinsky for laughing at my bad

jokes, contributing generously to my book collection, encouraging my love for curriculum and

challenging me to be a better researcher. Thank you to Professor Jennifer Wolf for teaching the

best class ever, The Young Adult Novel, and for solidifying my belief in the beauty and power of

YA literature. Thank you to my advisor, Professor Amado Padilla, for inspiring my thesis with

your work in adolescent resilience as well as for your guidance and infinite patience throughout

this process. Thank you to Laura Moorhead for your diligent care and unwavering faith in my

ability to finish this thesis. Thank you to Dr. Larry Zaroff, who passed away earlier this year.

Thank you for our many rich conversations on pediatrics and child development. You are greatly

missed. Thank you to Grace, Paul and Luisa for your warm hugs of encouragement and for

pestering me for thesis updates whenever I would procrastinate. Thank you to Linnea for all the

nights you stayed up with me “thesis-ing” as we called it. A giant thank you to my mother who

went above and beyond the call of duty, assisting me in everything from participant recruitment

to buying pizza for me and the kids "just in case we got hungry." Thank you, mama and papa, for

your infinite love and for giving me the privilege of pursuing my passions.

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 Table of Contents

Abstract……………………………………………………………………………………………1

Acknowledgements………………………………………………………………………………..2

Chapter One. Introduction………………………………………………………………………...4

Chapter Two. Literature Review…………………………………………………………………..9

Introduction to Disfigurement Studies…………………………………………………….9

Children’s Attitudes toward Disfigurement and Disability……………………………...13

Children’s Literature in the Classroom…………………………………………………..18

Chapter Three. Research Methods……………………………………………………………….22

Chapter Four. Findings…………………………………………………………………………..28

Student Engagement with Wonder………………………………………………………28

Using Wonder to Critically Consider and Discuss Complex Themes…………………...37

Chapter Five. Implications……………………………………………………………………….44

Chapter Six. Conclusion…………………………………………………………………………49

References……………………………………………………………………………………….51

Appendices……………………………………………………………………………………….56

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 Chapter One

Introduction

When given the choice between being right on being kind, choose kind.

—R.J. Palacio, Wonder

Since the release of Wonder by R.J. Palacio in 2012, readers all over the world have been

“choosing kind.” Wonder is a children’s novel written primarily from the perspective of August

Pullman, or Auggie, a ten-year-old boy with a disability. He was born with a rare and severe

craniofacial difference, presumably Treacher-Collins Syndrome, which makes his appearance

jarring and frightening to look at. Wonder follows Auggie as he attends school for the first time

after being home-schooled due to his frequent surgeries and medical problems. His journey

through the fifth grade is overwhelmingly emotional and inspiring, making it no surprise that

Wonder topped the New York Times bestseller list and has sold millions of copies worldwide.

Auggie faces many challenges throughout the book such as bullying and social anxiety, but he

ultimately achieves self-acceptance and friendship.

Wonder may be a stand-alone achievement for first-time author R.J. Palacio, but it also

represents a greater shift in the past decade towards disabled protagonists in American children’s

literature (Wheeler, 2013). In 2004, the American Library Association (ALA) established the

Schneider Family Book Award, which honors “a book that embodies an artistic expression of the

disability experience for child and adolescent audiences” (Wheeler, 2013). Seven out of the ten

recipients of this award have a preteen narrator with a disability. Furthermore, these novels

address the diverse and widely misunderstood spectrum of disability from dyslexia to cancer

with equally diverse portrayals. Wonder has won many awards, including the ALA Notable

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Children’s Book and the Christopher Award, but it did not win the Schneider Family Book

Award. Wonder, however, is the only novel within its genre to gain such popularity.

The New York Times reviewer of children’s books, Maria Russo, “sobbed several times

during Wonder,” and shared this experience with her “9-year-old daughter — who loved the

book and has been pressing it on her friends.” Wonder was also positively reviewed by The

Guardian, NPR, Parents magazine, and sixty-four children on Common Sense Media, one of

whom called it “the greatest book in the world.” Schools around the world have incorporated the

book into their curriculum. At Stevensville School in Fort Erie, Ontario, third-graders and fourth-

graders wrote a song and performed it at several assemblies after reading Wonder. In Paris

Elementary School in Maine, fourth-graders shared Wonder book reviews outside the classroom

to encourage others to read it. Capitalizing on this popularity, publisher Random House launched

a Tumblr site for readers to pledge to "Choose Kind. Over 34,000 signatures have been collected

so far. Why, then, did it not win the Schneider Family Book Award?

Wonder does not seem groundbreaking, especially not from the lens of disability studies.

After all, the book’s popularity stems at least partially from its cliché and problematic

representation of the disabled individual as an inspiration. This representation may not depict

disabled people as monsters, but it is still harmful because it places responsibility on the person

with a disability to be exceptional in order to overcome exclusion rather than on able-bodied

individuals to be accepting and collectively enact social change. The disabled individual is also

still seen as “other,” one-dimensional and synonymous with his or her disability, ignoring the

humanity and variety in the experiences and character of people with disabilities. However,

Wonder does attempt to go beyond this in several ways. First, by creating an idealistic and

inclusive school environment in which Auggie is able to thrive, Palacio demonstrates how

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societal attitudes are more disabling than the disfigurement itself. Second, Palacio utilizes

multiple narrators quite innovatively, dedicating most of the chapters to Auggie’s voice and

some chapters to the other young people in Auggie’s life. These include the chapter of his sister,

Via, which reveals how she is impacted by having a brother with a disability, as well as the

chapter of his best friend, Jack. Palacio has also released a chapter from the perspective of Julian,

the primary bully of the novel. Thus, readers are able to understand not only how Auggie is

impacted by the attitudes and behaviors of others, but also why these other characters react the

way they do. Readers are given a richly layered understanding of Auggie and his disfigurement

and are ultimately called to love and accept him.

Although Wonder was written by an American author and takes place in Manhattan, the

majority of scholarly research surrounding disfigurement, which Palacio relied on extensively in

writing Wonder, is produced by British researchers. Many of them come from the Center for

Appearance Research (CAR) at the University of the West of England in Bristol and the

nonprofit organization Changing Faces. CAR is the world’s leading research center on

disfigurement, body image and appearance-related studies. Its researchers have coined “visible

difference,” a more neutral term than disfigurement or deformity, as part of its larger mission of

promoting acceptance of appearance diversity. Changing Faces, on the other hand, is a London-

based charity for people with visible differences and their families. Its work is twofold: changing

lives by providing emotional and practical support to individuals with disfigurement and

changing minds by advocating for fair treatment and inclusivity in schools, workplaces,

healthcare, media, and policy.

One of its most notable programs is the Changing Faces School service, which helps

children and adolescents with visible differences in the United Kingdom adjust to school

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(Rumsey & Harcourt, 2012). The program administrators work with both the young person and

the school staff. The young person is provided with in-person preparation and educational

materials on social skills, bullying and self-confidence. The school staff is instructed on visible

difference, the issues associated with it, and what an educator can do to have a positive impact

on a visibly different child’s life. Furthermore, Changing Faces has also developed educational

resource packs for students without visible differences to be used in the classroom. The packs

include presentations, lesson plans, activities and resources on visible difference. Evaluations of

the Changing Faces School service and the educational resource packs have found that they are

effective in reducing bullying, improving visibly different children’s self-confidence, and

improving the staff’s and students’ understanding and acceptance of visible difference (Rumsey

& Harcourt, 2012).

In Wonder, Auggie Pullman did not have the structured and disfigurement-centered

support system that has developed in the United Kingdom. As far as readers know, he was not

regularly seeing a child psychologist, let alone one who specialized in appearance-related

psychological issues. He was not connected to other young people with visible differences and

their families, exacerbating his feelings of isolation due to his craniofacial syndrome. He was not

enrolled in a research-based school entry program designed specifically for visibly different

youth. Rather, Auggie was able to overcome the issues that visibly different children face

because he was lucky. With strong developmental assets such as a supportive, progressive and

proactive family and school community, he was resilient and fairly protected against the

psychosocial difficulties related to having a disfigurement. What of the visibly different children

who do not have these developmental assets? This, in many ways, reflects the reality of how the

United States treats visible difference and the needs of visibly different people. Visible

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difference is stigmatized and discriminated against, but the special needs of visible different

people as a result of these negative attitudes are, for the most part, ignored.

Research Questions

Wonder by R.J. Palacio has generated awareness of disfigurement among the general

public through its sheer popularity. It has found its way into the curriculum of classrooms across

the country. It has grown into a series of books and is in the process of becoming a full-length

feature film. Parents, teachers and librarians praise the book and its potential for promoting the

acceptance of difference among children. However, do children actually interact with Wonder

the way that these adults hope? This study seeks to learn from young readers about how Wonder

can positively impact young people, those with or without a visible difference. The research

questions for this project are the following: What engages middle school students while reading

or discussing Wonder? How do they interpret Wonder and its complex themes of bullying,

appearance, disfigurement and disability? What are the possibilities for children’s literature,

specifically Wonder, to facilitate these conversations?

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 Chapter Two

Literature Review

It’s like people you see sometimes, and you can’t imagine what it would be like to be that

person, whether it’s somebody in a wheelchair or somebody who can’t talk. Only, I know

that I’m that person to other people, maybe to every single person in that whole

auditorium. To me, though, I’m just me. An ordinary kid.

—R.J. Palacio, Wonder

This chapter consists of three sections. I will begin by providing a general overview of

the scholarship surrounding disfigurement or “visible difference,” so that it is clarified as a

concept within the context of this study. Then, I will review the research on children’s attitudes

toward disability, especially disfigurement, and the implications this has for the psychosocial

experiences and development of children with disfigurement. Lastly, I will discuss children’s

literature in the classroom and bibliotherapy. The majority of scholarship on disfigurement

presented in this chapter comes from British researchers as the United Kingdom is the center of

visible difference research. Furthermore, as disfigurement studies is still a burgeoning field,

many of the studies in the last two sections do not deal with disfigurement specifically but with

disability in general. The aim of this review is to illustrate the unexamined and exciting

intersection of the fields of children’s literature, disability, and education.

Introduction to Disfigurement Studies

Defining disfigurement. The definition of disfigurement or visible difference is variable

and subjective, depending on social norms and values (Thompson & Kent, 2001). Some body

modifications, such as piercings or tattoos, are not necessarily seen as disfigurements in certain

societies where they are widespread and accepted. However, port-wine stains or burn scars often

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are seen as disfigurements. The difference between how these are perceived depends on the past

experiences and learned understandings of what is normal as opposed to abnormal as well as

how abnormal is “too” abnormal among those who are observing them. Thus, several researchers

in disfigurement studies have adopted the following definition: “a difference from a culturally

defined norm which is visible to others” (Rumsey & Harcourt, 2004). Changing Faces, on the

other hand, defines disfigurement more specifically as “the aesthetic effects of a mark, rash, scar

or skin graft on a person’s skin or an asymmetry or paralysis to their face or body” (Changing

Faces, 2008). According to research conducted by the organization, over half a million people

(or one in 111 people) in the United Kingdom have a “significant disfigurement” to the face. The

number of people who are visibly different in the United States has yet to be determined.

These definitions of disfigurement are broad, encompassing a wide variety of differences

in appearance. Despite this, disfigurements can be divided into two types: congenital and

acquired (Rumsey & Harcourt, 2004). Congenital disfigurements are conditions that the

individual is born with. They can be apparent at birth or can become more obvious over time.

Harris (1997) classified congenital disfigurement as existing “pre-memory,” or that the affected

person does not remember life without the disfigurement. The most common congenital

disfigurements occur in the head or neck. For example, a cleft lip and/or palate occurs in

approximately one in every eight-hundred births. In Wonder, Auggie most likely had the far less

common Treacher-Collins’ Syndrome, which results in the underdevelopment of the cheek and

jaw bones. Craniofacial anomalies often lead to developmental or physical disabilities that may

require surgery and medical treatment, but are not usually associated with impairments in brain

function. Acquired disfigurements, on the other hand, occur as a result of a variety of events that

might occur in a person’s life (Rumsey & Harcourt, 2004). For example, traumatic events such

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as traffic accidents and fires can result in burn scarring and other significant changes in

appearance. Also, surgical and medical interventions such as the excision of tumors, tissue or

bone, chemotherapy, and even cosmetic surgery can alter appearance as well.

Disfigurement as disability. Severe disfigurement is considered a disability in both the

Equality Act and Americans with Disabilities Act because it can significantly impact a person

affected by it. Scholars have argued that disfigurement is a “social disability,” or the inability to

meet the behavior standards of a group and the resulting exclusion from aspects of normal life

such as employment (Ruesch & Brodsky, 1968). The disabling aspects of disfigurement rely on

complex interactions between social and individual factors. The noticeability of the

disfigurement and the reactions of other people impact the feelings, behaviors and personality of

the individual with disfigurement, which further impacts the perception of the individual by

others and so on (Rumsey & Harcourt, 2004). Thus, a disfigurement may be associated with but

is not itself a physical impairment. Rather, the stigma surrounding disfigurement is disabling.

The experience of a person with disfigurement depends on a multitude of factors. They

might related to the disfigurement itself, such as cause, type severity, visibility and location, or

they might be situational, such as family support, legal rights and access to healthcare. Despite

this, having a disfigurement often presents significant challenges for those affected and there is

considerable uniformity in the difficulties reported by people with disfigurement (Rumsey &

Harcourt, 2004). These difficulties often are related to negative self-perceptions and emotions as

well as problems with social interactions. Negative self-perception affects emotional well-being,

often resulting in problems such as low self-esteem, shame, depression and body image issues.

This affects and is affected by common problems related to social interaction, such as social

anxiety and avoidance of social activities. These can affect any individual with a disfigurement,

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because interestingly, “the severity of a disfigurement – whether it is defined clinically or

subjectively – is not a good predictor of psychological distress” (Thompson & Kent, 2001).

Because of the frequency with which people with disfigurement encounter negative

reactions from other people, it is unfortunately unsurprising that they experience more

psychological distress (Thompson & Kent, 2001). One consistent finding across many studies is

the high levels of anxiety among individuals with disfigurement. For example, among

individuals with skin disorders, Thompson, Kent and Smith (2002) and Jowett and Ryan (1985)

found that the majority of participants in their studies experienced anxiety. Depression is also

common, although it is less common than anxiety (Rumsey & Harcourt, 2005). However,

symptoms of psychological distress should not be taken lightly, as suicide is of significant

concern. Rapp et al. (1997) found that one out of four respondents to a survey for people with

psoriasis, the majority of whom had mild to moderate psoriatic severity, experienced suicidal

ideation or committed self-harm. Self-esteem and body image are areas that have been examined

extensively in disfigurement research. Although there is variation in how researchers in how

these concepts are defined and measured with regards to disfigurement, there is a general

consensus that people with disfigurement often have low self-esteem, negative self-perceptions,

and unfavorable views towards their bodies.

These negative reactions from others can also become prejudice and discrimination.

People with disfigurement are often judged as less likely to succeed, less easy to work with, and

less attractive (Goode et al., 2008). Ultimately, this discrimination affects quality of life,

including daily functional activities and social relationships. Stone and Wright (2013) compared

the employment prospects of people with facial disfigurement to that of people with disabilities

that do not affect the “beauty” of an individual. They sent three CVs and cover letters to 144

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actively recruiting companies in London. Applicants who were said to have facial disfigurements

or required wheelchair use were treated less favorably than applicants who were said to not have

either characteristic (Stone & Wright, 2013). Applicants with facial disfigurements were less

likely than “normal” applicants to be offered a job that required contact with customers.

Children’s Attitudes towards Disability and Disfigurement

Teasing and bullying at school. Several factors, such as social skills, individual

character traits and peer acceptance, strongly indicate the likelihood of victimization and

bullying. Research shows that teasing, ridicule, bullying and isolation related to appearance are

very common for children with facial disfigurement. Lovegrove and Rumsey (2005) found that

among their sample of adolescents without visible differences, seventy-five percent were

distressed about the teasing and bullying they experienced with regards to their appearance.

Because appearance-related concerns are already common among visible “normal” adolescents,

it would make sense that they are more common among visibly different adolescents. Adachi et

al. (2003) found that among their sample of twenty women with craniofacial anomalies, eighteen

of them, or ninety percent, were teased at school. Another study found that twenty-four percent

of ten-year-olds had been teased and bullied at school and similar numbers were found among

the fifteen-year-olds (Shavel-Jessop et al., 2013). The estimates of the prevalence of bullying and

teasing vary in the literature, but it is clear that children and adolescents with visible differences

will likely experience being teased and bullied due to their appearance.

There is a consensus in the research that young people with facial disfigurement often

experience peer victimization at school. However, less research has been done on how children

and adolescents who are not visibly different perceive visible difference. Stock et al. (2013)

administered a mixed-methods questionnaire to 412 students from ages twelve to fourteen in

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order to better understand how young people react to their visibly different peers. The

participants responded in a variety of ways. Their initial reactions to photos of visibly different

people included sympathy, shock, amusement, aversion, fear, curiosity, but they fairly

consistently adopted a “them and us” framework when verbalizing their reactions. The

participants also made assumptions about the visibly different people in the photos, primarily

that they must experience significant social challenges and/or are deserving of admiration and

respect. They also reported that they would behave with uncertainty, avoidance or compassion

towards the visibly different person. Stock et al. (2013) found that although the young

participants reported these negative reactions, they often stemmed from a lack of understanding

around visible difference rather than the intention to inflict emotional and psychological pain.

Other studies indicate that children with facial disfigurement experience more social and

behavioral difficulties than children without facial disfigurement. Kapp-Simon and McGuire

(1997) found that children with facial disfigurement initiated and received fewer social

interactions than their peers. This tendency towards having fewer social interactions and social

relationships among children with facial disfigurement was found to be related to appearance

dissatisfaction and behavioral difficulties, such as social withdrawal, shyness, depression, and

disruptive behavior. Krueckeberg et al. (1993) found that thirty-one per cent of their sample of

children with craniofacial anomalies from six to nine exhibited these behavioral difficulties

according their teachers and parents.

The significance of friendship. Adolescence is marked by self-consciousness, especially

with regards to appearance, friendships and dating, and this can be exacerbated having a visibly

different appearance. For example, Love et al. (1987) found that burn scarring negatively

impacted the social confidence of their sample of adolescent burn survivors. Turner et al (1997)

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found that among their sample of teenagers with a cleft, the majority of them experienced teasing

related to their appearance and reported that this lowered their self-confidence. Although it

would be expected that adolescence would be more challenging for those with a facial

disfigurement, Emerson and Rumsey (2004) found that within their sample, there were no

significant differences in satisfaction with physical appearance and friendships between

teenagers with clefts and their peers. Moreover, more teenagers with a cleft reported that their

families were supportive. Thus, visibly different young people do not necessarily always have

social and psychological difficulties.

Recently, researchers have become more interested in how and why some children and

adolescents with facial disfigurement are able to achieve positive developmental outcomes more

than others with similar conditions. Prior and O’Dell (2009) interviewed four pairs, comprised of

a visibly different child and his or her mother. They found that living with a disfigurement

required constant “vigilance” due to the needs and problems that arise from the unwanted

attention and negative reactions towards disfigurement. The participants reported being able to

cope well with this due to maternal support – specifically parent-child communication about the

disfigurement, the mother’s ability to seek out support from healthcare providers and educators,

and the mother’s ability to prepare for and anticipate new problems as the child grows up.

Another key finding was the significance of friendships in providing emotional support and

protecting against peer victimization at school. A similar study by Barke, Harcourt and Coad

(2014) examined coping among 9 adolescents with neurofibromatosis type 1 (NF1), a

neurological disorder that commonly results in disfigurements such as pigmentation and the

growth of tumors along nerves in the skin, brain and other parts of the body. The participants

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reported the importance of being well-educated on their condition, positive relationships with

health providers and the support of nonprofit organizations in buffering the challenges they face.

Friendship has also been found to be significant for children with disabilities, not just

disfigurement specifically. However, in order for these friendships to form, children without

disabilities must be able to accept and feel positively towards their peers with disabilities.

Researchers have studied how this can be promoted. Diamond (2001) found that children without

disabilities who spent more time with peers with disabilities have higher scores on acceptance

and understanding than children who do not have contact with children with disabilities. Buysse,

Goldman and Skinner (2002) found that in inclusive early childhood programs, the difference

between the number of friends reported by children with disabilities and that of children without

disabilities was not significant. Fox and Boulton (2006) found that the total number of

friendships was negatively correlated with experiences of bullying and peer victimization.

Together, these different studies suggest that increased exposure of children without disabilities

to children with disabilities can lead to more friendships formed as well as less teasing and

bullying towards children with disabilities.

Classroom interventions. While much research has been conducted on interventions for

children and adolescents with facial disfigurement, another area that has become of interest is the

creation and evaluation of interventions for children and adolescents without facial

disfigurement. These interventions seek to promote more awareness and understanding of visible

difference among young people who are not visibly different and educate them on how to behave

around their visibly different peers. The Changing Faces School service, which was described in

the introduction, is a successful example of this. Researchers have also explored the efficacy of

such interventions as well as designed their own. For example, Nabors, Lehmkuhl, and Warm

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(2010) designed a study in which 228 children without visible difference viewed line drawings of

a child with or without a facial disfigurement. The children assigned to view the line drawing of

a child with a facial disfigurement listened to positive information, specifically information that

emphasizes similarities between the participant and the drawn child, or information that was

unrelated to the line drawing. The study found that those who listened to the positive information

increased their ratings of acceptance of the visibly different child in the drawing (Nabors,

Lehmkuhl, & Warm, 2010).

Other studies on this topic have looked at intervention programs for visibly different

children in school. Wilson, Gaskell, and Murray (2014) looked at a multidisciplinary service for

child and adolescent burn survivors in England that includes a school reintegration visit. The

purpose of this visit is to provide information to the school personnel and classmates of the burn

survivor as well as address challenges that the child might have in returning to school after a

burn injury. The presentation educated students on burn injuries and scarring as well as worked

with teachers on facilitating discussions about the burn injury and scarring. Teachers felt mostly

positive towards the program. They described the class as a “family” and felt that the program

could have been more helpful in helping teachers encourage sensitivity and support among the

child’s peers. Teachers found that the program also made the situation an opportunity for the

students to learn about health and safety. However, the program did not take the opportunity to

discuss appearance concerns, which affects young people regardless of whether they have a

facial disfigurement.

Cline et al. (1998), on the other hand, employed an education pack to affect students’

attitudes towards peers with facial disfigurement. The education pack included the following: “a

video tape, an introduction to the theme for teachers, an aid to curriculum planning, examples of

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successful lesson plans, a compendium of classroom and library resources, and information on

types of disfigurement and relevant organizations” (Cline et al., 1998). The goal of the pack was

to educate children on the causes and treatment of facial disfigurement, the discrimination

against people with disfigurement, and the impact that this can have. Cline et al. (1998) found

that even after brief exposure to visible difference through a photo, the attitudes of students

became slightly more positive. The attitude changes, however, were greater after being taught

with the education pack. Thus, it does not need to be certain that visibly different children will

experience disproportionate teasing and bullying. While it is important to prepare children and

adolescents with facial disfigurement for the negative perceptions and behaviors of others, it is

equally, if not more, important to change those negative perceptions and behaviors.

Children’s Literature in the Classroom

many studies have shown that engaged reading is strongly correlated with reading achievement,

learning, and can compensate for low family income and educational background (Guthrie &

Wigfield, 2000). However, “engagement” is not so easily defined. Researchers have identified

many different components of engaged reading. This includes self-confidence in oneself as a

reader, intrinsic motivation to read, and “flow,” or a state of total absorption (Guthrie &

Wigfield, 2000). Engaged readers are active and focused on gaining conceptual understanding as

well as strategic in their interpretation of a text. In addition, engaged readers interact with their

peers in order to socially construct knowledge and meaning from a text. In short, Guthrie and

Wigfield (2000) concluded that “engaged readers in the classroom or elsewhere coordinate their

strategies and knowledge (cognition) within a community of literacy (social) in order to fulfill

their personal goals, desires, and intentions (motivation).”

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 One strand of reading engagement research is the discussion of children’s literature with

children. In their review of children’s literature research, Galda, Ash and Cullinan (2000) found

that in studies where students controlled conversations about children’s novels and teachers were

participants rather than discussion leaders, the students were able to relate the novels to their own

experiences and shape their interpretations based on their initial interpretation and that of their

peers. They also found that in studies in which students discussed informational children’s

novels (as opposed to purely informational texts), students were more likely to focus, respond to

the comments of peers, and broadly discuss topics related to the book (Galda, Ash & Cullinan,

2000). Because of this evidence of student engagement while discussing children’s literature,

researchers like Blaska and Lynch (1998) express interest in guided discussion of children’s

literature as a vehicle to increase understanding of disabilities and thus take this initial step to

increase social acceptance of children with disabilities.

Bibliotherapy. The reading of literature as a form of therapy is not new. Iaquinta and

Hipsky (2006) saw bibliotherapy, the processes of learning, emotionality and reflection through

reading and discussing literature, as rooted in “classic psychotherapy principles of identification

(with the character or situation in the story), catharsis (wherein the student gains inspiration), and

insight (which leads to motivation for positive change).” Educators have used bibliotherapy with

children in the classroom in order to encourage individual problem-solving, self-esteem and

positive adjustment to developmental challenges (Iaquinta & Hipsky, 2006). Studies on

bibliotherapy, though limited, indicate that it can be used as a therapeutic intervention as well as

promote attitudinal changes (Iaquinta & Hipsky, 2006). However, there is much room in the

literature for quantitative and empirical studies on bibliotherapy. Furthermore, bibliotherapy is

neither clearly defined nor consistently applied. Bibliotherapy is not necessarily individual

19
reading alone. It comes in diverse forms, including or not including pre-reading, guided reading,

post-reading discussion and/or a reinforcement activity in addition to individual reading. Thus,

the effects and potential of bibliotherapy are still, for the most part, unknown and debatable.

Despite this, researchers have found that bibliotherapy can positively affect children.

Hayes and Amer (1999) assigned two groups of children from the ages of seven to sixteen, who

either had Type 1 diabetes on “short stature,” to read children’s literature in which the main

character shared their condition and participate in a group discussion. Hayes and Amer (1999)

found that bibliotherapy and discussing the children’s literature promoted discussion among the

children of their feelings and concerns about their conditions, coping strategies, peer

relationships and self-care. Bravender et. al (2010) conducted a randomized, controlled trial with

eighty-one obese girls participating in a weight-management program for children. The

participants were randomly assigned to read the intervention novel, which describes a fictional

obese girl’s journey towards improved health, a control novel, or no novel at all. They found

significantly greater reductions in BMI among the intervention group, suggesting the potential of

children’s literature to augment weight loss among children in a weight-management program.

Bibliotherapy research supports the notion that reading about fictional characters with a

disability or illness can be beneficial for children living with the same or a similar condition.

What of the young readers who are not living with the same condition as the protagonist?

Can bibliotherapy promote greater understanding among young children of the issues faced by

others? There are very few studies on the utilization of bibliotherapy to change the attitudes of

children toward their peers with disabilities. Favazza and Odom (1997) examined the effects of

contact, books, and discussions on the attitudes of kindergarten-age children toward people with

disabilities. They separated the forty-six participants into three groups: high-contact, low-

20
contact, and no contact. The high-contact group participated in a program with three components

designed to promote acceptance of people with disabilities: indirect experiences with disability at

school (storytime and discussion of a children’s book with a disabled protagonist), direct

experiences (structured play with children with disabilities), and parental reinforcement (reading

the same children’s book with parents at home). The high-contact group showed the highest

increase in acceptance of disabilities.

Conclusion

The growing body of literature on disfigurement is part of a larger, more established

academic discourse on disability and reflects disfigurement’s unique place within that discourse.

Likewise, the popularity of Wonder mirrors a growing interest in and awareness of

disfigurement. It is well-established that people without disfigurement are often prejudiced

towards and discriminate against people with disfigurement and that people with disfigurement

often experience psychosocial difficulties as a result. Among disabled children and adolescents,

these social difficulties can manifest in teasing, bullying and social isolation by peers at schools.

Successful interventions, such as school re-entry programs and classroom education packs, have

been created to address this issue. However, there is minimal research available on the utilization

of bibliotherapy by educators to change the attitudes of children toward their peers with

disabilities and none that address disfigurement specifically. This neither reflects the potential

impact children’s literature could have on the lives of children with or without disabilities nor

does it minimize the importance of changing attitudes towards individuals with disabilities. The

few studies that have revealed the potential of literature to change attitudes and lives warrants the

investigation of Wonder by RJ Palacio as a classroom tool to promote discussions among

children about and acceptance of disfigurement and disability.

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 Chapter 3

Research Methods

The best way to measure how much you’ve grown isn’t by inches or the number of laps you

can now run around the track, or even your grade point average— though those things are

important, to be sure. It’s what you’ve done with your time, how you’ve chosen to spend

your days, and whom you’ve touched this year. That, to me, is the greatest measure of

success.

—R.J. Palacio, Wonder

This study examined how reading and discussing R.J. Palacio’s Wonder informs middle

school students’ understanding of selected complex themes: disfigurement, disability,

appearance and bullying. It also looked at student engagement with reading the novel and

discussing it among peers. My objective is to offer new, detailed understandings of student

perspectives and interpretations of Wonder. This is necessary in order to better inform the

recommendation of the novel to children and adolescents, the incorporation of it into school

curricula, and the use of it as a tool to promote inclusion and acceptance.

I conducted semi-structured qualitative interviews with eight students between the ages

of nine and twelve in Chino Hills, CA. Each student participated in an individual interview and a

group discussion with three other students. In both types of interviews, I asked them three sets of

questions in order to obtain three types of information: completion and comprehension of

Wonder, opinions, and personal experiences as they relate to the novel. All interviews were

recorded, transcribed and analyzed using both open and selective coding methods.

I speculated that the participants would interact with the novel in different ways than the

author intended or anticipated and that they would differ in terms of their engagement with the

22
novel and the discussion. I further speculated that these differences would affect the efficacy of

Wonder as a learning tool for the individual participant. However, this research was exploratory

instead of hypothesis-driven. The study was designed to mimic how Wonder would be used as an

intervention: assigned reading that may or may not be accompanied by group discussion. The

individual interview had open-ended questions in order to capture the diversity in individual

experiences and insights after being assigned to read Wonder. The group interview was designed

to generate interactions and dialogue between participants and explore how discussion could

further contribute to learning with Wonder.

The research project took place over the course of the 2014-2015 academic year. I

received Stanford University’s Institutional Review Board’s (IRB) approval to conduct my study

in December. I decided to change my population sample from children with craniofacial

anomalies to children without craniofacial anomalies because of difficulty gaining access to the

former population. This modification to my research protocol was approved in January. I

collected data in February and completed data analysis in April.

Population Sample & Selection

I interviewed eight participants (four male and four female) between the ages of nine and

twelve from Chino and Chino Hills in San Bernardino County, CA. I chose this age range

because it is the demographic targeted by Wonder, whose protagonist is ten years old. The major

demographic characteristics of the participants are similar even though I did not intend for them

to be similar in any characteristic except age. All participants are native English speakers and

identify as Asian-American: four Chinese-Americans, two Korean-Americans, one Filipino-

American and one Indian-American. Three attend local elementary schools, four attend local

middle schools and one attends a K-8 charter school. They reside in Chino Hills with the

23
exception of one participant, who lives in nearby Chino. All participants have college-educated

parents and come from middle class backgrounds with the exception of two, who come from

working-class backgrounds. These participants come from households that value and emphasize

education, learning and reading for pleasure. This population, though homogenous in ways

reflecting their suburban community, displayed much diversity in personality and perspective.

Data Collection

I located participants through the Kumon Math and Reading Center in Chino Hills, CA.

Kumon is the world’s largest after-school math and reading program in the world. I had worked

at this location for four years throughout high school and am still in contact with the employees

and students there. Because of my connection to the center, this sample was readily available and

easily assembled in the short amount of time I had to conduct my study. I sent the director of the

center a participant recruitment letter, which was forwarded to the parents of an estimated twenty

enrolled students between the ages of ten and twelve (see Appendix A for the letter template).

Once potential participants acknowledged their willingness to participate in my study, I

chose eight students from a group of ten. The remaining two students were not asked to

participate in the study due to significant scheduling conflicts. Through the director, I forwarded

IRB-approved consent and parental/legally authorized representative (LAR) assent forms,

assuring anonymity, the right to refuse to answer questions or to stop the interview at any time,

and no cost charged or compensation offered for the child’s participation (see Appendix B for

form templates). Three students had read Wonder prior to agreeing to participate in the study.

Two of these students were assigned to read Wonder in their school. The remaining five students

were assigned to read Wonder prior to their individual and group interview. All students

24
informed me of their completion of the book the week of the study and provided me with their

demographic information.

Interviews took place at the Kumon Math and Reading Center, a setting that the

participants are familiar and comfortable with. The study was conducted over the weekend on

February 7th and 8th. The students were split into two groups of four, depending on whether they

signed up to be interviewed on the Saturday or Sunday session. Each session consisted of four

individual interviews taking place in a small office space followed by a group interview in the

center’s classroom. I prepared thirty open-ended questions that tested the participants’

knowledge and understanding of Wonder as well as elicited opinions and personal experiences as

they related to Wonder (see Appendix C for interview questions). However, I ended up asking

many questions that are not included in the original thirty. The individual interviews were

designed to last about half an hour but depending on the student’s personality, interviews lasted

from twenty to thirty-five minutes long. The group interviews were designed to last one hour, but

they were much more challenging to facilitate. Holding the attention of middle school students

for more than half an hour proved to be difficult and they concluded the discussions organically.

The first group interview lasted forty minutes and the second lasted thirty-seven minutes.

In their individual interviews, the participants focused heavily on answering the

questions. Follow-up and probing questions often did not lead to unanticipated directions. The

participants were also much more concerned with giving me the answers that they thought I

wanted to hear. However, the group interviews led to animated discussions due to disagreement

among participants in their answers to the questions and less concern over giving the “correct”

answer. The group that came in during the second session led to the production of much richer

interviews. This was partly due to the overall lower engagement of the participants during the

25
first session. However, it was mostly due to significant improvement in facilitating a discussion

with children during the second session. From the first session, it became clear that the first set

of questions, which tested knowledge and understanding, was not helpful in generating

conversation between participants and it was omitted in the second session.

Data Organization & Analysis

I transcribed the audio recordings of the interviews verbatim between February and

March 2015 (see Appendix D for sample individual and group interview transcription). In all

transcripts, I identified participants by number based on the order in which they were

interviewed. I later assigned pseudonyms to these numbers in order to make composing my

findings section easier. I did not have participants choose a pseudonym because the participants

expressed indifference towards choosing one.

I started organizing the data using Interpretative Phenomenological Analysis (IPA). The

IPA method entails the detailed readings of interview transcripts followed by annotations made

by the researcher (Prior & O’Dell, 2009). The left margin is annotated with important issues and

insights that arise in the data. The right margin is used to document emerging patterns or themes.

The themes that seem to encapsulate the opinions of the participants are prioritized and identified

as major themes. These themes will be grouped under “superordinate themes” (Prior & O’Dell,

2009). These themes guided my creation of codes. I coded my transcripts in a series of four

passes. The first pass was categorical, the second and third were descriptive and in vivo, and the

fourth was interpretive.

My initial coding objective was to classify each participant by type of engagement:

engagement with the novel and discussion, engagement with only the novel, engagement with

only discussion, and engagement with neither the novel nor discussion. With the transcripts of

26
the individual interview, I looked for phrases and sentences that conveyed engagement or lack of

engagement with Wonder. With the transcripts of the focus groups, I looked for voluntary

participation, interactions between participants and changes in the opinions expressed in the

individual interviews.

After, I looked for references to the selected themes: disfigurement, disability,

appearance and bullying. I also searched for common threads throughout all interviews as well as

uncommon but interesting insights that were not included in my list of selected themes. This

coding process evolved as I modified my definition of engagement and looked beyond the five

themes. I changed my definition of engagement to account for the many different ways in which

participants displayed and expressed engagement with the novel and the discussion. I also found

new codes embedded in the transcripts that I did not anticipate, such as “completely off-topic.” I

also found new codes that were much more specific than the original five themes, such as

“inside” and “outside.” These were words that came up over and over again when discussing the

broader theme of appearance. These modifications to the coding process helped me overcome

my initial biases and more accurately answer my research questions.

27
 Chapter 4

Findings

Courage. Kindness. Friendship. Character. These are the qualities that define us as human

beings, and propel us, on occasion, to greatness.

—R.J. Palacio, Wonder

In this chapter, I will classify the eight participants by type of engagement: (1)

engagement with the novel and discussion, (2) engagement with only the novel, (3) engagement

with only discussion, and (4) engagement with neither the novel nor discussion. Each category of

engagement will be accompanied by an in-depth case study. Then, I will discuss significant

trends and insights that were revealed in the participants’ individual and group discussions of

Wonder’s complex themes of bullying, appearance, disfigurement and disability.

Student Engagement with Wonder

Criteria for engagement. A participant is considered engaged with the novel if she

completed the novel and displayed knowledge of Wonder during the individual interview. This

includes making specific references to the text when answering open-ended questions or

correctly answering questions that test knowledge of the text. She is also considered engaged if

she had strong emotional reactions, learned something new, or experienced developments and

changes in her opinions while reading Wonder. A participant is considered not engaged if she

makes little to no references to the novel or shows signs of dislike for the novel as a whole. Even

though all participants reported finishing the novel, I asked questions testing knowledge of major

events and characters to gauge whether or not she read the novel closely, if at all.

A participant is engaged in the discussion if she speaks often and at length during

discussion or engages in conversation with other participants about the text. She is also

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considered engaged in discussion if she makes accurate references to the text or further develops

the opinions expressed earlier in the individual interview during the discussion. Based on the

criteria above, I have determined that four students were engaged with the book and discussion,

two were engaged with book but not in the discussion, one was engaged in the discussion but not

the book, and one student was neither engaged with the book nor in the discussion.

Engagement with both the novel and discussion. Four participants — Leo, Michael,

Joshua and Caterina - displayed the effects that Palacio probably hoped to achieve with writing

Wonder for children and that educators want to achieve with teaching it. For example, Leo

displayed emotionality, retention and learning. The novel, though different from what he

normally reads, “touched (his) heart and (he) remembers what was inside it and it kind of taught

(him) a lot of things.” Joshua displayed changes in attitude: “I’m inspired to accept people more

instead of like staring at them and thinking they're like hideous or something actually look in the

inside from now on to like how their personality is and stuff.” Michael used the novel to inform

his own experiences, bringing up “one time when (he) went back to China and there was a man

who had no eyes. And there was like this other person like both of their arms were gone and their

legs were like different shapes like one was long and one was short like that.” With these

participants, reading and discussing Wonder proved to be valuable.

Case study 1: Caterina. Thoughtful and perceptive, Caterina was the most engaged

participant in both the individual interview and group interview. She finished Wonder two weeks

prior to the interview and for the purpose of the study. Even though the novel is not currently

being taught in her school, she participated in the study after hearing about it from various

teachers and classmates. Caterina enjoyed reading the book and felt that it influenced her “to

understand people more.” She “got a little teary-eyed” while reading Wonder and discussed it

29
with her sister. Caterina was the only participant who suggested Wonder as a potential bullying

intervention in the classroom: “I think teachers can stop bullying by like letting their kids read

books like Wonder and the point of view of the person that's being bullied.”

Caterina discussed the novel in detail. She mentioned specific moments such as “the

plague” and when “Jack said like how if he had his face he would wear a mask with it everyday

and if he could change it, he would.” She had very strong emotional reactions to these parts and

“felt angry and sad for (Auggie) at the same time.” She recognized these obvious teaching

moments in Wonder: “it taught me how like people are being bullied for stuff they didn’t do but

for how they are” and “I don’t think that’s fair.” Unlike the other participants, she did not name

these teaching moments as her least favorite parts. She hated Justin’s chapter because “that point

didn't make sense and it annoyed (her) that it wasn’t punctuated at all.” Even then, she saw this

chapter as important because it demonstrated “how other people at first would not but then at the

end, they would understand (Auggie) better and see and judge him for who he is on the inside

rather than how he looked.”

In the focus group, Caterina spoke the most and answered all the questions. She was not

afraid to disagree with the other participants, hold an unpopular opinion or refine her opinions

spontaneously. This can especially be seen when she debated Carlo about the definition of

disability. In her individual interview, she thought that even though “he might look disabled,”

Auggie is not because he “is still able to do stuff that other people can do.” When Renée and

Carlo expressed this same opinion in the focus group, she initially agreed but she started

qualifying her response. She and Carlo argued back and forth about the definition, but Carlo

eventually gave up because she kept supporting her arguments with references from the novel.

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 Engagement with only the novel. Renée and Vera were the most introverted and quiet,

which may have to do with them also being the youngest among the participants. They were able

to talk about the novel during their individual interview, but were very hesitant to express their

opinions in front of the other participants. During the focus group, they primarily spoke when

prompted or to confirm what another participant said. With these two participants, learning

occurred primarily through individual interaction with the text.

Case study 2: Renée. The youngest of all the participants at the age of nine, Renée was

also the most soft-spoken. She sometimes whispered her answer and often gave very brief,

sometimes one-word, answers. I gently prodded her to elaborate on them and reminded her at

different points throughout the conversations to speak more loudly. She is not comfortable with

talking to new people, but Renée loves reading for pleasure. She read Wonder to participate in

the study, enjoyed it and recalled details more quickly and accurately than the other students in

her session. She did not talk about Wonder with anyone. The novel is not currently being taught

in her charter elementary school. However, she thinks that it should be “because it's a really nice

book and it's about bullying too so it might make other people think about it more.”

Renée has, as many children do, a black-white perspective. She classified the characters

in the novel as either “good” or “bad” as well as “nice” or “mean.” The “bad” characters did not

show any kindness to Auggie in the novel while the “good” characters did. When asked about

the themes of the novel, Renée emphasized kindness the most, citing a precept from the novel

that stuck with her: “when choosing between right and choosing kind, choose kind.” Palacio’s

juxtaposition of Auggie’s kindness and Julian’s unkindness highlighted the unfairness of

Auggie’s situation for Renée. Unlike the other participants, she expressed that children like

31
Julian should be rigorously punished for meanness. She also emphasized equality the most,

reiterating the notion that “everybody should be treated equally no matter what they look like.”

On a personal level, Renée experienced heightened sensitivity to how words and actions

affect other people: “I think about things more and I think I'm being a little bit nicer. I think

about what I say more so that I don't hurt anybody's feelings.” Although she spoke very little in

the focus group, there were a few moments when she revealed this heightened sensitivity. For

example, even though Renée was not sure what autism is, she immediately objected to Carlo’s

definition of autism as “mental retardation.” She insisted that people with autism just “act

differently” and she strongly opposed the use of “retardation” or “disability” in describing

autism. However, after further discussion of disability, she became more comfortable with the

word and later conceded that autism can be considered a disability. This indicates that she was

opposed to the stigma surrounding these terms, not the recognition of difference.

Engagement with only the discussion. This category was included in the classification

scheme prior to the study, but I did not expect that any of the students would fall under this

category. If the student was not interested in the novel throughout reading it, I doubted that he

would be more interested while talking about it with peers. Because it seemed so unlikely, I

expected that no students would display this type of engagement, especially with a sample size of

eight. However, one student did: Carlo.

Case study 3: Carlo. He sat down silently in front of me with a bored look on his face,

his hands hesitating to put away his phone. It quickly became apparent that he was not interested

in reading or discussing Wonder with me. However, he read Wonder in two days, the weekend

before the session. This was confirmed by the correct answers he gave to the test questions.

Carlo did not discuss the novel with anyone after completing the novel and would realistically

32
not recommend it to others. Surprisingly, he was not invested in any of the characters of the

novel with the exception of Auggie’s dog, Daisy, whose death was the saddest event in the book

for him. His answers to the probing questions were brief and apathetic. When asked if he thought

that Wonder should be taught at his school, he reasoned that “students are required to read books

mostly everyday at school” already, so he “guessed it would be an okay thing to make kids read

it at school.” His individual interview ended early and lasted twenty-five minutes.

In the focus group, Carlo did not speak up voluntarily at first. He only answered

questions when spoken to. This changed after I asked the participants in the focus group to name

their favorite characters. Caterina, Renée and Vera gave expected answers like Via (Auggie’s

understanding sister), Summer (Auggie’s kind friend) and Auggie. Carlo said that his favorite

character was Julian, much to everyone’s surprise. After that, the other participants began

speaking to him directly and challenging him: “Are you sure about that?” He was quick to

defend himself, explaining that it was “not the bullying part” but “the part in the story where it

said he’s different in front of the parents than in front of the kids or other people.” This is a shift

from his individual interview in which he did not express any connection to the characters and

refrained from expanding on any of his responses. He explained to his peers that he related to

Julian because he felt that he has to take on different personalities depending on who he is with.

Carlo continued to disagree with the other three participants in his session, but he

primarily clashed with Caterina. When asked about the reactions that their own classmates would

have to a new student who looked like Auggie, the female participants hesitated to say that they

themselves would be scared but agreed that other people would be scared. Carlo, who was less

concerned with agreeing or being delicate at this point, was “pretty sure the term would be

disgusted but not scared.” Later, he debated with Caterina, arguing that Auggie is not disabled.

33
He was so invested in his stance and so adamantly against hers that he wanted “to go home and

go on Wikipedia and search disabled, bring it to school and shove it in (her) face.” Though

aggressive, this demonstrated his involvement in the discussion, willingness to continue the

discussion after the study, and desire to learn more.

Carlo did not think that reading Wonder had any impact on his worldview: “I mean if I

saw a kid like that on the street, I would probably think, ‘Whoa! What happened to that kid?’ But

if he was like at my school, I would - in my class, I try to get to know everybody like I said, so I

don't think the book changed anything.” However, after discussing this in the focus group, he

decided that he “(doesn’t) know anymore what (he) would do.” I considered this evidence of

engagement because he considered the alternative viewpoints of other participants and

reconsidered his original answer. While Carlo did not like reading Wonder and did not feel that

he learned anything from it, discussing the novel with students who disagreed with him

challenged his interpretations of it and encouraged him to develop his ideas.

Engagement with neither the novel nor discussion. This category was included to

anticipate students who did not end up reading Wonder. It did not occur to me that a student can

read the novel and not learn something from reading or discussing it. Because all students

reported finishing the novel before their interviews, I expected none of the students would fall

under this category. However, one student was not engaged with the novel or in the discussion -

Angelica.

Case study 4: Angelica. Within five minutes of her individual interview, I thought that I

would easily classify Angelica as engaged with the novel. She said that she read Wonder twice.

The first time, she read it on her own two months ago because her father and grandfather wanted

her to. She mentioned that she “cried once” while reading it. Prior to the study, she and her

34
family read it together but she admitted that she “wasn’t paying attention that much.” Wonder is

also being taught at her school. It has been incorporated into her language arts class, social

studies class and art class by her teachers. Thus, she has been exposed to Wonder in her home

and at school. Angelica was also the most talkative participant. She gave the lengthiest responses

to my questions and her interview lasted thirty-four minutes long. Despite this, she was not

engaged while reading the novel.

It is unclear as to whether or not she actually read the novel as suggested by her answers

to the test questions. For example, when asked to describe Auggie’s facial appearance, she said

that “he has one eye and that’s like saddening because you don’t want to see a person with one

eye.” She could not remember any other details. In Wonder, Via describes Auggie’s appearance

in detail. She mentions his two eyes, which “are about an inch below where they should be on his

face, almost halfway down his cheeks” (Palacio, 2012). Via mentions his other unique facial

features, such as his underdeveloped jawbone, droopy face, oversized nose and missing ears. The

illustration on the cover of Wonder has a boy with only an eye on his face and the word

“wonder” written over it like an eyebrow. Angelica based her description of Auggie’s face on

this illustration rather than on Via’s chapter.

Angelica answered the probing questions generally and broadly without making any

references to characters other than Auggie or events that occurred in the novel. For example,

according to her, the message of the story is: “If you bully, you’re just going to get bullied back.”

This is interesting because the primary bully in the novel, Julian, does not experience bullying. It

could be that this is genuinely her interpretation, but she could not name a bully in the novel

when prompted. She also supported her point with experiences from her own life and did not

support it with specific examples from Wonder. This was also case in the focus group.

35
 Angelica did not talk as much as the other participants in her focus group: Leo, Michael

and Joshua. When she did speak, she did not make any references to events and characters in the

Wonder. She also did not seem to remember the events that other participants talked about:

Leo: Yeah, he's rich. He has a mansion!

Angelica: Wait he does?

Leo: Yeah, he had a 200-person party in there.

Angelica: What?!

Leo: That's where he started the war, remember?

She was distracted very easily and often stopped talking about Wonder: “One of the awesomest

things is like ‘let it go.’ Please don't sing the song.” Angelica also made many jokes, repeating

on multiple occasions that she is “dead” and that the characters and their alternating points of

view made her “want to kill them.” Although she enjoyed talking to me and the other

participants and told me so after the interviews concluded, she did not actually talk about

Wonder.

Although it is dubious that Angelica read or completed the novel, she was able to talk

about some personal experiences with bullying and disfigurement during her individual

interview and focus group. She reflected on the scar on her ankle, which her classmates have

noticed and which makes her feel very self-conscious. She concluded that the scar is a type of

disfigurement and that a disfigurement “is something that anyone can have.” She also opened up

about being teased for being short and discussed her feelings on being shorter than her

classmates. Thus, while assigning the reading and discussing of Wonder may not have been

effective for Angelica specifically, broadly talking about issues of disfigurement, disability and

bullying gave her new insights on these topics and informed her personal experiences with them.

36
Using Wonder to Critically Consider and Discuss Complex Themes

Appearance: the “inside” versus the “outside.” All of the participants except for

Michael and Renée used the words inside and outside to discuss appearance: “It just matters

what’s on the inside, not on the outside.” This occurred especially when discussing the characters

and themes of Wonder. Kindness, bravery, generosity and malice were identified as inside

qualities while ugliness or beauty was identified as outside qualities. According to these

participants, the inside qualities were reflected in “what you do” and capture “what you really

are.” Outside qualities, on the other hand, are physical qualities and are “what you cannot really

change,” such as Auggie’s craniofacial anomaly. This is consistent with what the participants

agreed was the message of Wonder: the famous adage, “Don’t judge a book by its cover.”

However, the participants had difficulty distinguishing between “who he was” and “who

he was inside.” For example, Vera thought that Auggie’s craniofacial anomaly is “just his

appearance, not who he really is.” However, Caterina recognized that the disfigurement is also

who Auggie is: “He faced the fact that other people couldn’t accept him for who he is and yeah.”

There was tension between the understanding that Auggie is being unfairly judged for who he is,

a boy with a disfigurement, and their own discomfort with his “outside.” They associated

disfigurement with words like “scary,” “weird,” “creepy,” or a “monster.” The second focus

group was able to recognize these associations, but emphasized not being afraid to “get to know

someone better” and “actually really talk with them.” These associations led them to separate

Auggie from the disfigurement as opposed to untangling their own biases towards disfigurement.

From simplistic to nuanced conceptions of bullying. All participants agreed that

bullying occurs in Wonder. Their definitions for bullying were similar and very vague: “treating

other like not the way you want to be treated,” “being mean to someone,” “hurting them like

37
mentally and physically,” “picking on other people,” and “an act of unkindness or anything

negative to another person.” However, they gave diverse reasons for why a student might bully,

including low self-esteem, selfishness, broken homes, revenge, fun, power, dominance,

weakness, social approval, and human nature. According to each participant, a student is bullied

due to some form of difference. They unanimously identified Julian as the bully and Auggie as

the bullied in Wonder. Some participants included Julian’s mother because she “photoshopped

(Auggie’s) face in the class picture” and Eddie because he physically hurt Auggie and his

classmates who defended Auggie.

Their informed answers reflect the work of the anti-bullying programs and campaigns

that have spread all over the United States since Georgia became the first state to pass an anti-

bullying in 1999. However, their knowledge and understanding of bullying do not reflect their

personal experiences. They also all agreed that bullying is a problem in schools today, citing

different news stories. However, only two of them, Angelica and Michael, reported experiencing

or witnessing bullying firsthand in their own schools. For example, in his individual interview,

Leo thought that bullying was not a problem in his school, but it could be in other schools:

Well, honestly I've never really been in any bully situation before so I don't really know

what it is like to be bullied and I've never really seen bullying either so it might or might

not be a problem in a school depending on how much people bully in a school but

bullying can be a big problem if people actually decide to bully a lot and they don't give

up.

Later in his interview, though, he mentioned two peers, Steven and Rico. He described his

classmate Steven as “kind of crazy” and “bouncing off the walls.” Rico, on the other hand, is in a

wheelchair and is not a student that he knows personally. The students in his class eventually

38
“got so used to him” that they “wanted to push his wheelchair.” However, other students who are

not familiar with Ricardo “all looked at him and stared at him and Ricardo wasn’t in a good

mood so he kind of threw a fit.” Leo presented Steven and Rico as examples of “weird”

individuals that he and his classmates “got used to.” The social isolation of Steven and Rico due

to their physical or behavioral differences was not seen as bullying by Leo.

These students agreed that bullying is “bad” and that bullies are “bad people.” However,

it is not that simple. In her individual interview, Angelica told me that students in her school

were bullied if they did not read Wonder. Laughing, Leo recounted a story to the focus group

about another class in his school that was reading Wonder, in which the students “all planned up

to go into the book and go beat up Julian and they all said, ‘You punch him in the head. I'll sock

him in the eye.’” The irony was not lost on Joshua, who suggested that these students should

read Julian’s chapter, a story that R.J. Palacio wrote after the release of Wonder. Julian’s chapter

showcases his perspective and reveals that he “had nightmares of August’s face.” This led Leo to

reflect on his anecdote, saying that “(Julian) has a reasonable excuse” for what he did. The

discussion allowed the participants to question their preconceived notions of who bullies are as

well as how and why bullying occurs.

Defining disability and generating debate. I asked the second focus group if they

thought that Auggie is disabled. By law, his craniofacial anomaly is considered a disability.

Because each participant in the focus confidently answered no in their individual interview, I

expected them all to agree that Auggie is not disabled. However, Caterina’s exploration of “yes”

as an answer sparked a debate between her and Carlo.

Carlo: No, because disabled means you're not able to do certain things and Auggie can

still do everything that regular people do.

39
 Renée: I think he's not disabled because he's not restricted from doing anything. It's just

that his face is different.

Caterina: I feel like he wasn't but he was disabled for how he ate like he mentioned it like

how he eats like messy, like not like how normal eat.

Carlo: That's not disabled!

Caterina: Well, it kind of is.

Carlo: He can still eat.

This led to a long discussion about whether or not the craniofacial anomaly is a disability

because of its effects on Auggie’s ability to eat. Unknowingly, they discussed the often debated

components of disability - timing, normality, and significance. Caterina argued that August is

disabled because he had to have surgery and eat through feeding tubes. In response, Carlo

thought that because this was no longer the case, August was no longer disabled. However,

Caterina believed that way August eats is still not “normal” and quoting the novel, she said that

“he eats like a turtle.” Carlo found it absurd that eating messily could be considered a disability.

Carlo: It depends on whether you think eating and spitting out food at the same time is

disabled.

Interviewer: So what does it mean to be disabled then?

Caterina: It means you can't do stuff like normally like other people can. You might be

able to do it, but you might do it differently than most people would.

Because Carlo was having trouble articulating his response, I asked, to his relief, “If I can't play

basketball as well as normal people and I'm just terrible at basketball, am I disabled?” Caterina

responded that the inability to play basketball is not a disability because “that's like on a different

stand than like eating and like with autism, socially interacting.” She argued that the inability to

40
play basketball would not get in the way of my day-to-day life like a craniofacial anomaly or

autism would. Caterina’s definition of disability evolved considerably from when she started

reading Wonder. Reflection and conversation caused her mold her definition until it became the

following: a disability must result in having to conduct a major life task (her example was eating)

differently from “normal” people and with significantly more difficulty.

Although the participants could not agree on whether or not Auggie’s craniofacial

anomaly is a disfigurement, they all agreed that his appearance is not.

Interviewer: Do you guys think that Auggie's appearance is a disability?

Caterina: No. It affects how people look at him but it's not how it changes him.

Renée: I think it was just incredibly bad luck.

Vera: He says he's kind of like a medical wonder.

Carlo: No, because it's only affecting his face, not his brain, how his body works or

anything.

They all agreed on disability as difference, but the nature and the extent to which that difference

becomes disability was a point of contention and necessitated further discussion.

Understanding disfigurement: the importance of terminology. The participants with

the exception of Renée, who insists that Auggie “just looks different,” agreed that Auggie’s

disfigurement is “a significant problem” or is “something wrong with him.” However, they did

not possess the language to describe what exactly was different about Auggie’s face or to explain

why people felt so negatively towards it, even after reading Wonder. For obvious reasons, this

made it difficult to discuss disfigurement:

Angelica: So like, I was telling her that if you guys have the same - if Julian didn't know

that Auggie had those disformations, so like how he got them or like how he feels about

41
 them so that's why he's judging him. But if Julian had the same disformations - the same

formations - then Auggie would have nightmares of Julian too.

Michael: Can I just say something? It's called mutations. I just thought you should know.

“Disformation” is not a real word and mutations can result in disfigurements but are not

disfigurements.

In his individual interview, Michael defined disfigurement as “something that's wrong

with genetics or his genes or it's like a mutation, something that they couldn't fix in their own

gene or like sometimes when their mom is giving birth to him like it was something wrong with

his genetics.” While many types of disfigurements have a genetic basis, this is still a limited view

of disfigurement. Other participants used terms such as “facial problems,” “facial disorder,” and

“deformity” to refer to August’s disfigurement. One student used the medical term that was

mentioned in the novel, “craniofacial anomaly,” but he later admitted that he “did not really

know what that is.” I used the above moment during the focus group to talk about the use of

these different words that they used as well as the term disfigurement with the participants.

Reading the novel was helpful for the students in understanding the potential emotionality of

disfigurement, but it was far less helpful in talking about and understanding the concept of

disfigurement.

Falling into the stereotyping trap. While reading Wonder, the participants learned

about Auggie and formed their own opinions of him. They described him as “inspirational,”

“funny,” “self-conscious,” “nice,” and “brave.” His story gave them “the feels” and showed them

that he is “someone that has been through a lot.” Caterina and Leo felt particularly strong about

“the plague,” which is a “game” that Julian started and that Auggie’s classmates played. The rule

was that if anyone came into physical contact with Auggie, they would have thirty seconds to

42
wash their hands or use hand sanitizer. Leo thought “that's just pure cruelty doing that to

someone” and Caterina cried while reading about it.

The participants clearly admired Auggie and were acutely aware of the unfairness of

Auggie’s situation. However, they tended to believe that Auggie and his experience are

representative of all individuals with disfigurement, their personalities and their experiences.

Their responses during their individual interviews revealed many assumptions that they have

about people with disfigurement and disabilities as a result of reading Wonder. These

assumptions, though seemingly harmless, resulted in the participants separating themselves from

people with disfigurement and feeling “really bad for them” rather than feeling empathy.

After reading Wonder, the participants believed that people with disfigurements in

general are restricted socially: “They don’t get to make friends like other people can” and “they

don’t get to meet people normally because other people will judge them by their appearance at

first.” They also experience many “hardships” and “challenges” because “it’s kind of hard to live

with a mutation.” However, these challenges have only made them “stronger,” “nice” and

“brave.” According to the participants, people with disfigurements also have low self-

confidence, “feel kind of bad about themselves,” and are “afraid of themselves.” They needed to

be treated differently: “I feel like I would treat them a little bit more since people don't treat them

as they're normal. More by like I would be a little bit more friendly than I would towards like

people.” Thus, the participants extrapolated generalizations about people with disfigurements

from Wonder.

43
 Chapter 5

Implications

If every person in this room made it a rule that wherever you are, whenever you can, you will

try to act a little kinder than is necessary – the world really would be a better place. And if

you do this, if you act just a little kinder than is necessary, someone else, somewhere,

someday, may recognize in you, in every single one of you, the face of God.

—R.J. Palacio, Wonder

What Can Reading and Discussing Wonder Do for Children?

Wonder alone can engage some children, but not all. Although the majority of the

participants enjoyed the experience of reading Wonder and read it closely, two did not. While

this population sample is certainly not representative of all middle schoolers, it is clear that

Wonder, despite its acclaim and saccharine charm, will not be appealing, interesting or engaging

to every middle schooler. Some middle schoolers, such as Michael, will be intrinsically

motivated to start and complete reading Wonder on their own and others will not. Some of the

middle schoolers who would not normally choose to read Wonder will be assigned to read it by

their teachers and parents, as three participants were prior to the study. Even then, one participant

in the study, Angelica, was either unable to complete the reading or could not remember

anything about the book. Assigning Wonder to promote values such as kindness, resilience and

acceptance in children is creative, progressive and well-intentioned, but the extent to which this

occurs is dependent on the level and type of engagement that the child has with the text, which

will vary widely. When using Wonder to teach important values, skills and issues, this needs to

be taken into consideration.

44
 Wonder can spark dialogue and debate among children on its complex themes. This

study focused on the particularly difficult and complex themes of appearance, bullying,

disfigurement and disability. As illustrated in the results of this study, children are more than

capable of going beyond identifying the themes of the novel. Children can contextualize these

themes within their own lives and their society as well as use the novel to inform their personal

experiences with these themes. Furthermore, they can use the novel to share these intimate

thoughts and experiences with others. Children can also have lively and thoughtful conversations

on these topics with each other, not just with the moderator. In group discussions, children

deconstruct and develop their personal interpretations of these themes as well as challenge and

consider the interpretations of their peers. They support their ideas with references to the novel,

personal experiences and acquired knowledge on these topics from the adults in their lives.

Through debate and dialogue, children realize the complexity of the themes. When using Wonder

as a teaching tool, educators and parents need not underestimate the ability of children to

understand these themes and discuss them deeply with adults and with each other.

Wonder can be discussed through critical lenses with children. Children are capable

of examining Wonder and its themes from various critical lenses in literary theory. These

criticisms can arise organically and unintentionally from discussing the themes of Wonder. One

crucial lens that connects the themes of bullying, disfigurement and appearance is the disability

lens. Disability studies, which first appeared in the United States in the 1980s, examines

disability as a social construct and thus emphasizes social, cultural, political, economic, historical

approaches. From this lens, children can come to different conclusions on the nature of Auggie’s

disability, if he is disabled at all. As Caterina did, children are capable of producing a definition

that is consistent with the current legal definition of disability in countries such as the United

45
States and the United Kingdom from critically thinking about the representation of disability in

the novel. Participants also briefly alluded to power, class, gender and culture when discussing

the theme of appearance, which I would have explored further if there were more time. This

demonstrates that children can extract new meanings and critical questions from the novel

through discussion. As Renée asked when discussing bullying, “What does it mean to be cool

anyway?”

What Should We Do Now?

Wonder must be discussed through critical lenses with children. For children, reading

Wonder can simplify the novel’s themes while discussing it can complicate them. Wonder is

certainly compelling from a storytelling perspective and children grasp the intense emotionality

of it. The novel is also nuanced in its representation of disability, perhaps not nuanced within the

context of disability studies but certainly within the context of children’s literature. However,

children do not always pick up on these nuances. This leads to shallow interpretations of the

novel’s themes and messages such as “everyone is equal” and “we should all just be nice to each

other.” While these are certainly notions that children should learn, they ignore the reality that

disability is difficult to teach and understand. They conveniently bypass the need for greater

understanding of the meaning, nature and consequences of disability. Furthermore, Wonder, due

to its popularity, is one of the few or the only representations that children are exposed to. As a

result, children stereotype people with disabilities as heroic or inspirational as opposed to

normal, uniformly kind and resilient as opposed to diverse and more than just their disabilities.

Although this seems positive, children are in actuality still otherizing and separating themselves

from the disabled person with a wall of pity and “special treatment.” Teachers and parents who

assign Wonder to children must take care to encourage children to challenge these notions

46
through critical lenses, especially the lens of disability studies, in order to truly promote empathy

and understanding.

The wonder of Wonder is still, for the most part, unclear. Published in 2012, Wonder

is still relatively new and academic discourse on it has been limited to disability literary

criticism.

Limitations. This study is an introduction to the engagement with Wonder and the

interpretation of its themes among its target audience of middle school children. There is much

room for more studies on the interaction between readers and Wonder or other works of

disability children’s literature. The small population sample of this study does not account for

differences by race or class in student engagement and interpretation while reading and

discussing Wonder. Furthermore, participants were recruited from students enrolled in an after-

school math and reading program. They come from households that value education, reading and

learning. The families also presumably have the time and financial resources to enroll their

children in an academic enrichment program outside of school. Convenience sampling and

limiting my sample to a small size made participant recruitment and data collection manageable

and time-efficient. These strategies limit my ability to make generalizable conclusions from my

data. However, this was not my objective with this study. I sought instead to collect a variety of

experiences that children have while reading and discussing Wonder in order to inform the use of

the novel as a teaching tool.

Due to time constraints, interviews were not conducted before I assigned Wonder, which

limited my ability to gauge participant understanding of bullying, appearance, disfigurement and

disability prior to reading the novel and resulted in my reliance on self-reporting of reading

engagement. Another limitation is that this study took place over the course of one weekend.

47
Thus, it can only offer a glimpse of student engagement and discussion at a single time-point.

Another concern is that the young participants in this study constructed their responses based on

what they thought I wanted to hear. Anticipating this, I verbally reminded the participants at the

beginning and in the middle of all the individual interviews and focus groups that they are

encouraged to give their honest opinions, there are no right or wrong answers and they can

choose not to answer a question if they do not want to. Despite this, I did find that some

inconsistencies in the answers that a few participants gave within and between their individual

and group interviews. However, the purpose of my research was to examine student engagement

with reading and discussing Wonder. Thus, these inconsistencies can and did provide interesting

insights into whether reading and/or discussing Wonder can promote developments in student

understanding as well as student comfort in discussing difficult topics.

Future directions. Future studies can address the following questions: How might

interpretation and engagement differ among different populations? These can include readers of

different racial and ethnic backgrounds, readers of different social classes, readers of different

sexualities, children and adults with a disability, adolescent readers and adult readers. How do

conversations on Wonder evolve over a longer period of time? Do middle schoolers experience

quantifiable changes in attitude towards bullying, disfigurement and disability before and after

reading or discussing Wonder? How do different pedagogies affect these changes in attitude, if at

all? How do these different attitudes translate into interactions with people with disfigurement

and disability? Can we have equally or more productive discussions with children on

disfigurement and disability without children’s literature? How does student engagement and

interpretation differ with other texts that deal with the same subject matter as Wonder?

48
 Chapter 6

Conclusion

The things we do are the most important things of all. They are more important than what

we say or what we look like. The things we do outlast our mortality. The things we do are

like monuments that people build to honor heroes after they’ve died. They’re like the

pyramids that the Egyptians built to honor the pharaohs. Only instead of being made out

of stone, they’re made out of the memories people have of you. That’s why your deeds

are like your monuments. Built with memories instead of with stone.

—R.J. Palacio, Wonder

Wonder by RJ Palacio is an important step towards the inclusion of people with

disabilities, but it is still not enough. Just as telling children to "be nice to everyone" is not the

comprehensive solution to the teasing and bullying experienced by children with disfigurement

and disability, the compulsory reading of Wonder by RJ Palacio is not the comprehensive

solution to the stigma against and misunderstanding of disfigurement and disability. This study

showed that students will not necessarily be engaged with reading or discussing Wonder and can,

without discussion, be prone to feelings of pity rather than empathy, shallow understandings of

Wonder’s themes, as well as the stereotyping and generalizing of people with disfigurement and

disabilities. Why then bring Wonder into the classroom? This study also demonstrated the

capability of children to go beyond the passive admiration of the emotional and inspirational

nature of Wonder and its charming characters to the active critique of the novel and collaborative

discussion of the complicated social issues that it touches upon. These critical discussions, to me,

and the children who have them are where we will find the wonder of Palacio’s Wonder.

49
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Appendix A

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Appendix B

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57
58
Appendix C

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 Appendix D

Sample Individual Interview Transcript (Participant 4)

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Sample Group Interview Transcript (Focus Group 2)

61