By Madeleine DeWelles

P.h.D. Student, University of Toronto, Ontario Institute for Studies in Education

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Abstract

 

Often, storybooks claim to represent the lives of children, their experiences, their relationships, and the challenges they may face. Storybooks also may represent how the lives and experiences of certain children are “different” from those of other children. Storybooks claiming to represent differences or disability aspire to inspire empathy, and to “normalize” differences and disability within children’s lives. However, this paper will show that while disability might seem to disrupt concepts of normalcy, is very often communicated through a framework of normative demands that represent a certain kind of childhood, without disability, or any named difference. To illustrate the persistence of normalcy, three children’s storybooks from the series Special Kids in School® (JayJo Books, 2002-2018) are analyzed: Taking Down Syndrome to School (Glatzer, 2002), Taking Dyslexia to School (Moynihan, 2002), and Taking Weight Problems to School (Dean, 2005). These storybooks topicalize three disabilities/differences that are “taken” to school: (a) Down syndrome, (b) dyslexia, and (c) weight/health problems. The problems, differences, and disabilities these stories represent are all made to be problems in certain, and often very similar, ways. How problems are made by adults and then represented to children is of interest, and herein lies the main focus of this paper — that these three storybooks portray having a disability or having a “problem” as being “unlike” the normative experiences of other children, but then simultaneously encourage children to focus on the ways that the characters in the story are “just like” their peers.

 

            Keywords: disability; children; Down syndrome; dyslexia; normalcy; school; weight

Just Like but Unlike: Sameness, Difference, and Disability in Children’s Storybooks[1]

Storybooks often claim to represent the lives of children, their experiences, their families, friends, and, often, the challenges that children might face or the ways in which their lives are “different” from those of other children. These storybooks, claiming to represent differences or disability, aspire to inspire empathy, kindness, and understanding in children, and to “normalize” differences and disability within children’s lives. However, as this paper will show, disability, while it might seem to disrupt concepts of normalcy, is very often written through a framework of normative demands that represent a certain kind of life; in particular, a certain kind of childhood, without disability, or any kind of named difference. To illustrate this persistence of normalcy, three children’s storybooks from the series Special Kids in School® (JayJo Books, 2002-2018) are analyzed: Taking Down Syndrome to School (Glatzer, 2002), Taking Dyslexia to School (Moynihan, 2002), and Taking Weight Problems to School (Dean, 2005). These storybooks were chosen because they are about three disabilities and differences that are topicalized, and then “taken” to school: (a) Down syndrome, often defined as a genetic “disorder” and characterized as an intellectual disability; (b) dyslexia, defined as a reading “disorder”; and (c) weight/health “problems.” Also, these three stories all share a commonality — that is, the problems, differences, and disabilities these stories represent are all made to be problems in certain, and often very similar, ways. How problems are made by adults and then represented to children is of interest, and herein lies the main focus of this paper — that these three storybooks portray having a disability or having a “problem” as being “unlike” the normative experiences of other children, but then simultaneously encourage children to focus on the ways that the characters in the story are “just like” their peers. In this way, disability is understood largely through its opposite — sameness, normalcy, or being “just like” a child who is not named as having a disability or a difference. This representation of difference being explained through sameness is a contradiction that is likely confusing to children, but, nevertheless, is what these three storybooks represent to children.

Rod Michalko, of the Ontario Institute for Studies in Education of the University of Toronto, discussed how the tension between being “unlike” and “just like” places disability in a liminal state between normative demands and the disruption of these demands (personal communication, July 18, 2019). As such, the question of being “just like” is twofold, and the second movement of this paper shows that children who are deemed “different” and those who are assumed to be “normal,” “the same,” or “without difference” are both engaged in the question of “what’s it like?” That is, the characters represented in these storybooks seem to wonder, and even to simulate, what’s it like? to be the same, whereas children consuming these stories are engaged in a questioning of what’s it like? to be different (DeWelles, 2019)[2]. Through these two movements — first of exploring the liminality of being “unlike but just like,” and, second, exploring the notion of simulation, or feigning “what’s it like” to have a difference or a disability — this paper ultimately argues that the three analyzed storybooks, which claim to be about differences and disability, do not really disrupt or disturb notions of normalcy or sameness. Instead, they are much more involved in the maintenance of normalcy and of sameness. In other words, storybooks about disability and difference reproduce already held notions of what it means to be different and what it means to be the same. In so doing, this paper does not suggest that we have to change once again or improve how differences are represented, but, rather, this paper suggests a different relationship to sameness, to normalcy, and to notions of what it means to be “the same.”

Before introducing the three storybooks that will be analyzed in this paper, Taking Dyslexia to School, Taking Weight Problems to School, and Taking Down Syndrome to School, consider the publisher’s “Welcome to JayJo Books” description of Special Books for Special Kids (JayJo Books, 2002-2018b). The logotype Special Books for Special Kids comes from the series Special Kids in School®.  The title of this series prompts us to wonder who these “special kids” might be, and why JayJo Books has published books supposedly for these special kids. The website claims that Special Books for Special Kids, part of the Special Kids in School® series, are designed to show the “chronically ill child’s peers that he/she is just like them but with special challenges that he/she faces with courage and fortitude each day” (2018b). Here, the tension between “just like but unlike” and the tension between whom these stories are about and whom these stories are for (the purpose) is evident. The publisher’s description of Special Books for Special Kids (2018b) claims they are for “special kids,” but the next sentence says that these books are more for the peers of disabled children, children who are chronically ill, or children who have other conditions. In the section that follows, not only will the three storybooks be introduced but this section will also provide examples of how the contradiction of being “just like but unlike” is at play in these stories, illustrating how storybooks about disability, rather than disrupting normalcy, in fact show that normalcy needs disability in order for a logic of sameness to prevail. In other words, through these storybooks, disruption to normalcy is ironically achieved through its opposite — the maintenance of normalcy. The persistent and pervasive nature of normalcy is the reason why this paper is not as interested in whether or not these storybooks make an individual child more compassionate or understanding toward difference or disability. As Welch (2016) writes in her analysis of the consequences and harms of pervasive Whiteness in children’s literature, “although we might ensure that a single child’s library does not imply that white characters are the norm, children’s literature in general certainly does, and that is what generates the harms in question” (2016, p. 369). To a similar extent, it is not my argument that children’s storybooks as pedagogical tools are harmful; nor is it my argument that individual children will not get any benefit from consuming these storybooks. Rather, it is that these storybooks, again and again, represent disability or any named childhood difference or deviance as a problem; and call children, disabled or not, back toward a persistent logic of sameness, of being “just like,” of being normal, of being without disability.

Creating the “Unlike but Just Like” Character

There is a common theme in the structure of The Special Kids in School® Series (JayJo Books, 2002-2018a), as follows: First, children consuming these storybooks are represented with what difference is featured (be it dyslexia, Down syndrome, or weight). And then, the stories describe how such a difference makes going to school hard, different, or uncomfortable for the characters. However, while the characters are explaining their differences/disabilities, the characters also make a rather persistent claim that they are all “just like you” (that is, their peers without differences, who supposedly represent sameness and normalcy). Additionally, the stories culminate in a discussion of how the characters and narrators of the stories are either “just like” their peers, or are trying or working hard to be “just like” their peers, thus placing the characters in a liminal state of being “unlike but just like.”

To illustrate such a structure, beginning with Taking Dyslexia to School (Moynihan, 2002), readers are introduced to Matt, the narrator (and main character) of the storybook. Matt is a young, school-aged, male child who has dyslexia and, throughout his story, Matt narrates what it is like to have dyslexia at school and how dyslexia makes Matt different. Matt also asserts that just because he has dyslexia, it doesn’t mean that he “can’t learn” or that he “isn’t smart,” supposedly “just like” his peers without dyslexia. This assertion — that his dyslexia doesn’t impede his ability to “be smart” — is at the core of Matt’s story and his experience with dyslexia. For instance, at the beginning of the story, Matt states, “Hi! My name is Matt, and I am a kid with dyslexia. Dyslexia is a kind of learning disability, which is a grown-up way of saying that sometimes it is hard for me to learn….Having dyslexia doesn’t mean I can’t learn. My teacher says I’m very smart” (Moynihan, 2002).  Here, we are introduced to Matt’s struggle with words and reading; that is, it is difficult for Matt to learn, even though he is told he is smart.

Regarding Taking Down Syndrome to School (Glatzer, 2002) and Taking Weight Problems to School (Dean, 2005). At the beginning of Taking Down Syndrome to School, we are introduced to Nick, a character with Down syndrome and the narrator of the story. After explaining that he has Down syndrome, Nick says,

One thing you might notice about me is that I don’t learn as fast as you do. I have to work extra hard to understand things in school. I am working super hard on my reading right now, because I want to read all the same books that you can read (Glatzer, 2002)!

In both storybook examples above, there is a return to a logic of working hard in order to “be like” their peers. In particular, Matt’s dyslexia is represented as not preventing him from learning, whereas within the representation of Nick’s Down syndrome, this is not the case. For Nick, he doesn’t learn as fast as you (his peers), and so he must work very hard to be able to, for example, read the same books as you (his peers).

Consider what might be perhaps a surprising inclusion in this analysis — how weight problems are represented in Taking Weight Problems to School (Dean, 2005), where we are introduced to Tina, who is represented as overweight. Tina’s story is included in this analysis in order to trace how disability, and any corporeal deviance, is represented, and really only explained within the context of sameness and normalcy. For instance, at the beginning of her story, Tina says,

Hi! My name is Tina….It’s morning, and I am getting ready for school. Not too long ago, I didn’t like getting dressed for school, because I didn’t feel pretty when I looked in the mirror. That’s because I am overweight.

Also, think about the following: “Because I was overweight, I sometimes felt really different from other kids. The worse I felt about myself, the more I wanted to eat. The more I ate, the more weight I gained” (Dean, 2005).

In Tina’s case, her difference is not directed at learning or her supposed ability to learn, but, rather, about her emotions, her feelings (which are explained by her different, “excessive” way of eating) and her deviant body. However, much like Matt and Nick, Tina asserts that she doesn’t like feeling “different” from the other kids. In fact, when Tina feels different, it makes her feel bad, which she says results in her eating more and gaining more weight. This sentence positions “feeling different” as something to be warned about, and hopefully avoid. That is, it seems that Tina is asking whomever is consuming this storybook not to make her feel different, otherwise she will eat more and gain weight. But then again, Tina’s entire storybook is about how she actually is different because she is overweight, which begs the question of whether Tina’s story is really about difference, or if it is more about how Tina can be the same as her peers, and how Tina can achieve normalcy.

In a similar fashion, in Taking Down Syndrome to School (Glatzer, 2002), Nick says, “I have feelings just like you. It makes me sad when people make fun of me. I didn’t do anything wrong to get Down syndrome and it’s nobody’s fault. I don’t like to feel different from other kids” (Glatzer, 2002). This “not liking” to feel different is compelling, especially given that all three of these storybooks claim to be about disability and difference. But, if the characters in the story do not like to feel different, then these storybooks are much more about how the characters can feel “the same” or get closer to being “just like” their peers, and, furthermore, achieving and liking this “just like” status. Sameness, normalcy, and being “just like,” are therefore desirable for the characters in these storybooks, which privileges those children who are not represented as different, and continues to produce the desire, indeed the expectation, of normalcy and sameness.

Double-consciousness and Liminality: Being Unlike and Just Like

To begin the next section, which focuses on the liminality or the in-between nature of being between disability, difference and sameness, consider “double-consciousness,” a term explained by W.E.B. Du Bois (1903) as being in a state of “twoness” within the world — that of living Blackness, but having to understand his Blackness through Whiteness, its dominance, and its violence. Du Bois writes:

….the Negro is a sort of seventh son, born with a veil, and gifted with second-sight in this American world – a world which yields him no true self-consciousness, but only lets him see himself through the revelation of the other world. It is a peculiar sensation, this double-consciousness, this sense of always looking at one’s self through the eyes of others, of measuring one’s soul by the tape of a world that looks on in amused contempt and pity (Du Bois, 1903, 3).

Additionally, Lewis Gordon (2017) expands and explains Du Bois, noting:

Double consciousness involves seeing oneself from the perspective of another that deems one as negative….That there is already another perspective makes the subjection who lives through double consciousness relational….This relational matter requires looking beyond blackness ironically in order to understand blackness” (Gordon, 2017, 6).

Applying this double-consciousness and sense of twoness to Taking Down Syndrome, Dyslexia, and Weight Problems to School, we must understand the contradictions presented to children, who are consumers of this story. First, children are taught to believe that Down syndrome, dyslexia, and weight are conditions that result in problems or difficulties at school. But, at the same time, Matt, Nick, and Tina repeatedly tell readers that they are “just like” their peers. In this way, there is a double-consciousness of being “just like” and “unlike,” but also, being unlike is explained through the expectation of being, or at the very least becoming, “just like.”

Similar to Du Bois (1903), Patricia Hill Collins writes of the “outsider within” status, referring (1990, p. 5) to “the location of people who no longer belong to any one group.” It seems that Matt, Nick, and Tina occupy this “outsider within” status, which is also representative of the “twoness” to which Du Bois (1903) alludes in his discussion of double-consciousness. That is, the characters in all three storybooks — Taking Down Syndrome to School, Taking Weight Problems to School, and Taking Dyslexia to School — are outside of sameness because of the representations in this storybook. Nick, Tina, and Matt are all represented as having experiences that make them “unlike”their peers, but all the while, these storybooks continue to assert that these characters, regardless of the difference that is represented, are “just like” their peers. In this way, the characters of Matt, Tina, and Nick really are representations of the “outsider within.” These characters are represented as outsiders within storybooks that reproduce the demand of becoming the “same as” children without named differences, or at the very least, “just like” children without named differences.

Erevelles (2014) also references Collins (1998) and describes the existence of not belonging to any group as rather nomadic, travelling at times along and at times in-between, the borders of identity, of knowledge, or, as in the case of this paper, the sense of being “just like” and “unlike.” Taken together, Du Bois (1903), Collins (1986), and Erevelles (2014) offer important insight into double-consciousness, twoness, and the liminality, or being in-between, which might arise from feeling inside and outside, between and within, just like and unlike.

Applying these concepts of liminality, twoness, and double-consciousness, let us return to Matt from from Taking Dyslexia to School (Moynihan, 2002). Matt recounts how he was diagnosed with dyslexia, in particular how his mother had him tested for a learning disability with another adult character, a teacher named Ms. Jackson. After taking his test, Matt says,

After my test, my mom and I had a big meeting with Ms. Jackson. Ms. Jackson told us I had trouble reading because I had dyslexia….Having dyslexia means that I have to work extra hard at school. With help from my parents and teachers, I can learn to read and write well too (Moynihan, 2002).

Matt also explains some of what happened after getting his test results, and what these results meant for his experience at school. Matt says,

Now I have a special education teacher called Mr. Davis. We meet during reading time at school and three days a week after school…. Dyslexia doesn’t stop me from learning new things….Sometimes I just need extra time to finish my schoolwork (Moynihan, 2002).

Essentially, these examples illustrate how children consuming Matt’s story are presented with definitions of disability that contradict themselves yet are simultaneously present. That is, Matt can be “just like” his peers, but only on the condition that he works extra hard, takes diagnostic tests, and attends a special education class.

What about Tina, who is represented as having weight problems? Is she also faced with this double-consciousness of being represented as “unlike” but still wanting to be “just like”? Yes, Tina is represented as in between the “unlike” and the “just like,” and she experiences the twoness that Du Bois (1903) theorizes. For instance, after Tina tells readers that she is overweight, and doesn’t like to feel different because of her weight, she mentions the ways that her weight is managed. This “management of weight” can be connected to the management of what Garland-Thomson writes of extraordinary bodies, noting, “the meanings attributed to extraordinary bodies reside not in inherent physical flaws, but in social relationships” (Garland-Thomson, 1997, p. 7). Fatness, like disability, is a social relationship, and the fact that Tina is asserting that she doesn’t like to feel different because of her weight conflates the medical and the physical with the social. Still, Tina’s weight, and this “feel of difference” that she describes, is nevertheless managed.

Regarding the management of Tina’s weight, she discusses that she is in a group with other children who have problems with their eating; the group is run by a therapist named Ms Joanne. In this group, Tina talks about her eating and also about different eating disorders that other characters in the group have, such as anorexia and bulimia. Toward the end of Tina’s explanation, she says, “Ms. Joanne told us that some kids like to make themselves feel better by eating too little or too much” (Dean, 2005). Additionally, Tina talks about her nutritionist, Ms. Heather, who gives Tina a food plan and encourages her to exercise with her family and go on walks with them. In Tina’s case, her story is essentially about returning her body to being “healthy,” assumedly, healthy like her peers (by healthy, this is really another way of saying thinner).

However, what is key about Tina’s story, along with Matt’s story and Nick’s story, is that these storybooks represent an adult-centred expectation that sameness and normalcy are the backdrop against which differences are represented and explained to children who likely do not have differences. Furthermore, also like Matt’s and Nick’s stories, Tina desires to be “just like” her peers, and even claims that she is “just like” them, despite readers being told the many ways that Tina is not like her peers, such as how she has a nutritionist and goes to group therapy. This “likeness” and “unlikeness” return to Garland-Thomson’s (1997) comments that the meanings attributed to “extraordinary bodies….reside in social relationships” (p. 7). That is, it isn’t that Tina’s weight makes her feel different, or even that her weight and body size is how she will feel “the same.” Rather, the feeling of being “like” or “unlike” returns us to the social, specifically, the ways from which Tina’s body is made to feel different and “unlike” that of her peers.

Furthermore, at the end of Tina’s story, after narrating how she is overweight and seeking help to manage her weight, Tina introduces one final character — her school nurse, Ms. Jaime. In the story, Ms. Jaime tells Tina:

….kids come in all, colours, shapes, and sizes. She says it is a good thing that we are all different, but there are things that everyone needs in order to be healthy….And guess what? Even if we all eat and exercise the same amount, we are still going to be different sizes (Dean, 2005).

Finally, on the last page of the story, Tina says,

Here’s how you can help me or other kids who have weight problems. I like to have friends, so please be my friend. Try to think about the ways we are alike….And I always remember what Ms. Jaime said … Kids come in all colours, sizes, and shapes, and that’s okay! (Dean, 2005).

From the examples above, it is particularly interesting that Ms. Jaime, the school nurse, says that even if we all did the same things, we would still all be different plus that it is all right that “kids come in all colours, sizes, and shapes.” While it might be true that bodies all are different and will be different regardless of how we manage them, the message that kids can all do the same things and still be different is a rather confusing and contradictory message to portray to children. Tina’s entire story is about how she can choose to eat certain ways and engage in certain activities to change the size and shape of her body in order to “be healthy,” assumedly like her peers. This example adds even more complexity to the liminal sense of being “just like” and “unlike.” To explain, following Du Bois’s (1903) concept of twoness and double-consciousness, there appears to be a double-expectation going on between the characters in the story and the children consuming their stories (DeWelles, 2019, p. 57). For all three characters — Matt, Nick, and Tina — there is an expectation to be “unlike” and “just like.” For the children consuming these stories, there is an expectation to understand how it is possible to be “unlike but just like,” but also have the expectation to treat their peers with marked differences “the same.” That is quite confusing for children, but, nevertheless, is an expectation evident in all of these stories. This is not to say that these stories represent difference in bad or good ways, but rather, the messages these stories represent and then reproduce are centred around a background of sameness and of normalcy, which is expected to be achieved even amidst the message that children with differences are not “the same.”

How, though, are Tina, Matt, and Nick made to feel different when these storybooks iterate numerous times that these characters are just like their peers? Why are they represented as feeling different in storybooks that supposedly aspire to inspire empathy, kindness, and understanding in children? Rod Michalko discussed the phrase “just like,” and how it is important to consider the word “like” (personal communication, July 18, 2019). Being just like someone indicates that the person is not. The case of Tina, Matt, and Nick, who are constantly told that they are just like their peers, is yet another iteration of how the characters in this storybook are not their peers, even though they might do the same things as their peers, or are trying to do the same things as their peers. In this way, while the phrase “just like” does place these characters in a certain state of “in between” being with and without disability, or with and without difference, it does not change the ways in which Taking Dyslexia to School, Taking Down Syndrome to School, and Taking Weight Problems to School position the characters of Tina, Matt, and Nick as not like their peers. Regardless of whether these characters are represented as “unlike but just like,” the word “like” essentially means that these character are not their peers.

The Question of Simulation: From “Just Like but Unlike” to “What’s it Like?[3]

So far, this article has focused heavily on the liminality of being “just like” and “unlike,” as well as the contradictory message of being “just like but unlike.” This paper now moves on to the question of how the question of “what’s it like” is practiced; indeed, embodied, through acts of simulation, or acts of feigning both what one has and what one does not have. In his book Simulations, Jean Baudrillard (1983) writes “[to] dissimulate is to feign not to have what one has. To simulate is to feign to have what one hasn’t. One implies a presence, the other an absence” (Baudrillard, 1983, p. 5, emphasis added). For Baudrillard, to simulate implies an absence —feigning what one does not have. Storybooks about difference, then, go hand-in-hand with the concept of simulation by appeasing a certain curiosity of “what’s it like” to have a disability or to be different, supposedly for children who do not have differences.

In disability studies, there are a few questions surrounding simulation. Is simulating disability a good practice? Is it a bad practice? Does it adequately address the question of “what’s it like” to be disabled? Should we even ask, “what’s it like”? What is the origin of the desire to find out “what’s it like” to be disabled or different?

In the article “Blindness Simulation and the Culture of Sight,” Titchkosky, Healey, and Michalko (2019) address this question of “what’s it like?” in relation to disability, specifically, blindness simulations. The authors note, “Disability simulation is a curious phenomenon, stimulated as it is by a curiosity that springs from the certainty that ability and disability are essentially opposite experiences” (2019, p. 123). This “certainty” that ability and disability are opposite leads the authors into a discussion of the stimulation of simulation specifically as it related to blindness simulations and the assumption that sight (or to be sighted) is the “natural way” of “knowing things.” But beyond simulation, knowledge, and the culture of sight, Titchkosky et al. (2019) ask what has made it possible to have a desire to “know about” disability, or any named difference, through simulation, or through engaging in an act or a scene that is a fabricated version of what might be, or what might be known (Vizenor, 1999). What stimulates (encourages, sparks, drives) such a version of knowledge rooted in what might be known, and how might we all be in a relationship with simulations? As Titchkosky et al. (2019) ask, how might we all contribute to the stimulation of simulation? How are we all implicated in the processes that make simulation possible within our mundane, everyday practices, such as reading storybooks to children?

Following (2019), storybooks about Down syndrome, dyslexia, weight problems, or any other social difference give children a momentary experience of “what’s it like” to have a difference, to live with a difference, even to be different. Of course, this call to empathy, this call to include all children, and even the call to treat everyone the same comes from good intentions, but there is a certain simulation occurring in these stories, making storybooks about difference into artefacts of simulation (DeWelles, 2019, p. 47). Consider, for instance, an example from Taking Down Syndrome to School (Glatzer, 2002), wherein Nick, the narrator, states,

One thing you might notice about me is that I don’t learn as fast as you do….There are other things that are hard for me too. Sometimes I stutter or don’t speak very clearly. Mrs. Randall, a special kind of teacher called a “speech therapist,” helps me exercise the muscles in my mouth. We practice the sounds of letters and words. You may have trouble understanding what I say. If you do, just ask me to say it again. You can ask my teacher to help too (2002).

This example illustrates simulation insofar as Nick is calling readers into what it might be like to have a speech therapist, and to go to speech therapy. Nick’s narration of his speech therapy is directed at children who likely don’t go to speech therapy and who likely don’t have Down syndrome. In this way, Nick’s narration, which is really a simulation of Down syndrome and of rehabilitative practices that someone with Down syndrome might experience, again only reconfirms that Down syndrome is not “just like” other children, even though this question of “what’s it like” that Nick’s character answers claims to make children more aware and empathetic of how Nick is “just like them.”

In relation to simulation and the logic coming closer to the knowledge of what it might be like to experience disability or to be “just like” children without a disability or named difference, consider Judith Butler’s discussion of nearness and farness. In Notes Toward a Performative Theory of Assembly (2015), Butler discusses the togetherness of bodies, such as how bodies form alliances, communities, and how bodies persist. Butler writes,

….presumptions about farness and nearness are already in there in most of the accounts of ethics that we know. There are communitarians who do not mind the local, provisional, and sometimes nationalist character of the communities to which they consider themselves ethically bound and whose specific community norms are treated as ethically binding. They valourize nearness as a condition for encountering and knowing the other and so tend to figure ethical relations as binding upon those whose faces we can see, whose names we know and pronounce, whom we can already recognize, whose forms and faces are familiar (Butler, 2015, pp. 99-100).

In this articulation of nearness and farness, Butler draws an important connection to what is happening in storybooks about Down syndrome, dyslexia, weight problems, and any named social difference. That is, there is a cultural assumption at play whereby these books, in representing that children with named differences are “just like” their peers without differences, there is a certain desire to draw children nearer. But these storybooks do not exactly draw children nearer to each other, and especially not to children with disabilities or differences. Instead, returning to simulation, these storybooks draw children nearer, much nearer, to an experience of “what it’s like” to either experience disability momentarily through simulation, or to an experience of “what it’s like” to experience being without disability momentarily through dissimulation.

However, regardless of whether simulation or dissimulation is in question, Butler’s concept of nearness and farness applies to children and the representation of children in storybooks not necessarily because such a representation draws children closer to each other (that is, drawing children with and without disabilities nearer to each other), but because these representations draw children closer to normative expectations of children who are not represented as having a disability, or as having any named difference.

Returning to the storybooks in question, some examples should be considered.  From Taking Down Syndrome to School (Glatzer, 2002), Nick says,

Some kids with DS go to special schools, but not me. I go to a public school with all sorts of kids. Some have disabilities like me, but most of them don’t. I think it’s great that we all get to meet each other and learn from each other!

Butler (2015) states that Nick’s declaration is about not going to a special school, and that he gets to learn from and meet his peers (who likely do not have disabilities, as Nick says). This example represents children who have successfully been included, and school is represented as a community where children, with and without disabilities, are together. However, Nick also says later in the storybook,

You can’t catch Down syndrome from me or anyone else. Either you are born with it, or you aren’t….So it’s okay to play with me! In fact, I would love playing with you. I like having fun, just like you do. Friends are very important to me” (Glatzer, 2002).

Here, Nick seems to encourage his peers to come nearer to him by explaining what his Down syndrome is not something scary, or something unwanted, which does not necessarily change children’s perception of what Down syndrome is but does reproduce already-held notions; in fact, to really bring them nearer to normative expectations of childhood, how children should conceive of disability, and even of the childhood expectation of making friends. In this way, children are drawn nearer, much nearer, to logics of sameness, of not being different, and are taken further away from making disability and difference matter in ways beyond continuing to be understood as a loss, a limit, and a lack. Ironically, in the context of simulation, the question of “what’s it like” brings us much nearer to normalcy, to already-held conceptions of disability, thus pushing disability and difference further away.

In the three storybooks from The Special Kids in School® Series (JayJo Books. (2002-2018a), explored by this paper, the characters have all been feigning or simulating to be “the same” or “just like” their non-disabled, non-different peers. What might this feigning sameness do for the disruption of normalcy? Not very much, as this paper argues. That is, regardless of whether simulation or dissimulation is in question, simulation (the feigning not to have either what one does have or what one does not have) still reverts to a relationship with sameness, and returns to the background of normalcy. That is, the characters in the storybook feign sameness (that is, they feign to be “just like” or not to have the differences that they are named to have). On the other hand, the children for whom the representations of differences are aimed (those who assumedly don’t have differences) only experience difference and disability momentarily, which only re-confirm previously held beliefs about what disability is, and continues to privilege sameness, normalcy, and being without disability, or any named difference.

Next, consider an example from Matt’s dyslexia story (Moynihan, 2002). While discussing his learning problem, and after explaining the test he has to take to discover and name this dyslexia, Matt repeats what seems to be his refrain: that having dyslexia does not mean he is not smart. Moreover, he notes that “Albert Einstein, a famous scientist, and Thomas Edison, the inventor of the light bulb, both had dyslexia!” (Moynihan, 2002). Later on in his story, Matt writes about all he can achieve, despite having dyslexia. For instance, Matt tells readers that Mr. Davis, his special education teacher, has a friend who is a lawyer and has dyslexia. Matt says, “Mr. Davis told me he has a friend who lives with dyslexia. His friend is his lawyer. Lawyers have to read and write a lot. With hard work and help from my teachers, maybe I can even read and write that well someday! Even though I have dyslexia, I know I can be anything I want to be when I grow up” (Moynihan, 2002).

Although this example might be an encouraging representation of dyslexia — that is, dyslexia is not “that bad” and that it can be overcome — it still returns to Matt being without dyslexia. Following the previous discussion of simulation, Matt’s character in this example is also engaged in an act of simulation; but, more specifically, what Baudrillard describes as dissimulation, meaning the feigning not to have what one does have. In Matt’s imagination, when he becomes a lawyer, Matt dissimulates his dyslexia — it is as though he is getting closer to imagining “what’s it like” not to have dyslexia, and this excites Matt. However, what might Matt’s excitement be doing for the children consuming this storybook? If Matt is excited at the thought of not having dyslexia, then dyslexia is again positioned as something that should not be had, and of a condition that impedes the normative demands placed on children, while promoting the normative notion of children growing up to be successful.

In particular, the example of Matt potentially becoming a lawyer and of being anything he wants to be when he grows up connects to Rosemarie Garland-Thomson’s (2005) discussion of overcoming disability. Garland-Thomson (2005) notes that “overcoming” narratives of disability are reductionist and focus primarily on how disability is (or can be) avoided, eliminated or, essentially, come over. This “coming over” of dyslexia is exactly what Matt is doing when he says, “Even though I have dyslexia, I know I can be anything I want to be when I grow up.” Furthermore, Matt becoming a lawyer, which involves “lots of reading and writing” positions Matt as really overcoming his dyslexia — so much so that he might be immersed in a field where there is a lot of reading and writing. In this way, Matt has really overcome dyslexia. But, an interesting movement also occurs in this example. Not only is Matt’s desire an example of overcoming disability (and, as a result, of simulating sameness and normalcy), Matt’s example also stimulates, or encourages, normalcy. Overcoming disability is a way of not only avoiding disability but of making it disappear in order to stimulate (encourage, make possible) not only the appearance, but also the maintenance, of normalcy and sameness. Matt can be a lawyer even though he has dyslexia — just like his peers without dyslexia. Matt can dissimulate dyslexia — he can feign not to have what he does have through his imagination of overcoming dyslexia and of becoming a lawyer. Simulation, in asking “what’s it like to have,” and dissimulation, in asking “what’s it like to not have,” maintain normative expectations of children — that is, having a disability or any sort of named difference can be imagined, but only momentarily. If such a difference is a lived experience (such as Matt’s dyslexia), then it must be imagined away.

In a similar way, Tina (Dean, 2005) “getting healthy” and making good choices regarding food and exercise is another example of an overcoming narrative. Throughout her story, Tina comments on how eating with her family, going to her food group, and sticking to her meal plan help her make “healthy choices.” However, as Mollow (2015) notes, the idea of healthy choices reflects the power of corporeal control, which Mollow argues is laden with ableist ideologies. Moreover, making healthy choices implies a certain amount of willpower — specifically, the power to overcome powerful urges and resist one’s natural appetite and cues for hunger. Similar to Matt’s narration of how he has to work harder with dyslexia, as well as Nick’s narration of working harder with Down syndrome, Tina is portrayed as working hard to stick to her meal plan in order to get healthy, which is really a euphemism for getting thinner. Much like Matt, when Tina articulates her desire and her willpower to get healthier, she, like Matt, engages in dissimulation — the feigning of not being overweight, of not embodying the kind of corporeal difference that marks her as deviant.

In all three storybooks, this idea of “working hard” reflects Mollow’s discussion of overcoming disability, or any corporeal difference. However, overcoming disability also pairs with dissimulation or feigning not to have what one does have in order to momentarily “prove” normalcy; or to prove that disability or any marked difference can be forgotten and even overcome entirely, with hard work and willpower. This act of dissimulation or feigning not to have what one does have, like simulation, does not really alleviate normative expectations of childhood, or change the representation of disability and corporeal difference at all; it still privileges normalcy, keeping sameness, and the idea of not having or of being “just like” the kids without differences in its dominant position.

Disruption or Maintenance: Where Do We Go From Here?

This paper does not suggest that differences and disability are represented in wrong or poor ways, but rather posits that the reproduction of representing differences is not as disruptive to normalcy as it might seem. As such, the focus of this paper now shifts toward a re-orientation to sameness and to normalcy. The inescapability of what is perceived as normal is difficult to get around; one might be inclined to say that escaping normalcy, or even a return to “sameness” or being “just like” is impossible. In such a case, it is useful to imagine normalcy not as a thing, and not even necessarily as a set of expectations, but, instead, as an orientation of thoughts, meanings, interactions, and relationships (Titchkosky, personal communication, November 29, 2018). Therefore, it is possible to come closer to what orientation to normalcy these storybooks claim to have, and what the consequences of such a relationship are, both to the adults who write these storybooks and to the children who consume them.

This paper shows that storybooks about disability aren’t really about disability or difference; instead, they really teach children who are not represented in such storybooks about disability through the context of sameness, of normalcy, and of being “just like.” This does not cause much disruption to normalcy, but, rather, reproduces it. This paper shows how stories represent children with disabilities in a liminal state — that is, between disability/difference and between sameness/normalcy. The children consuming these stories essentially simulate what it might be like to have a disability, which really does not disturb very much of already-held ideas of what disability is — namely, that it is a loss, a lack, a limit, and something to move away from. In both of these ways, storybooks about differences and disability are not for children with disabilities — they are for children without disabilities.  In this realization — that is, the teaching of differences and disability might really be the teaching of sameness and normalcy — is a way of re-orienting toward normalcy. Such a reorientation means getting closer to normalcy, to sameness, and of recognizing that its maintenance is often done through difference and disability. Moreover, the representations in children’s storybooks offer contrary insights into what adults expect of children: To be understood in terms of loss, limit, and lack; To be “the same but different”; To be in between “just like and unlike.” All of these are contradictions, and contradictory expectations, but, nevertheless, are represented to children and are the tools for which meaning is made for children about disability.

Conclusion: Better Representations? More Representations?

Perhaps as teachers and scholars of disability studies, we should be less inclined to think of other, different, or even “better” representations of differences and disability. This is because simply adding to the roster of storybooks “about” difference likely won’t do very much to disrupt already-held notions of disability as a loss, limit, a lack; as something to escape; and as something to become “just like” (just like being without disability, that is). At the very least, it would be beneficial if storybooks claiming to be about disability, or any named social difference, avoided the message that to be disabled is to be “just like,” which ultimately reproduces the normative understanding of difference and disability as only a problem that needs to “get closer” to sameness, to normalcy, to being without difference.

Additionally, to avoid the risk of reproducing more of the same, teachers and children should be guided through exercises that reveal how disability and its representation to children are taken-for-granted in storybooks, and, indeed, in Western culture. This paper does not suggest that storybooks like those in The Special Kids in School® Series (JayJo Books, 2002-2018a) should not be used. These storybooks should be used because they are full of meanings, new meanings, which might not reproduce already-held beliefs and perceptions of disability. For instance, classroom teachers might ask their students to do some research about where these stories originate and for whom they are intended. In so doing, there is the possibility of releasing the contradictions and tensions that surround disability and its representation. For instance, the realization that storybooks in The Special Kids in School® Series (JayJo Books, 2002-2018a) are not for “special kids” at all, but rather are for children who are not deemed “special.” Additionally, there is potential for teachers to comment on the irony of how a storybook claiming a child with Down syndrome, dyslexia, or a weight problem is “the same” is littered with examples of how these children are not the same. In such a way, the possibility of rethinking normalcy (Titchkosky and Michalko, 2009) offers teachers and students the opportunity to engage with disability studies in a way that is not the study of disability, but, rather, the ways in which we make meaning of people, of problems, of normalcy, and of sameness. The teaching of how meaning is made and that we are all meaning-makers, and that cultural artefacts have meaning beyond what is apparent, is very valuable for students and for teachers of disability studies because it does disrupt, or at least gets us closer to a disruption, of the normative order under which meaning is so often made.

Footnotes

[1] Portions of Just Like but Unlike originally appear in Narratives of Down Syndrome: Representations of Intellectual Disability in Children’s Literature (DeWelles, 2019). However, this article represents a new direction, wherein there is examination of not only how Down syndrome is presented to children but also how other named differences are presented, such as dyslexia and weight problems.

[2] Discussions regarding “what’s it like” and simulation originally appear in Narratives of Down Syndrome: Representations of Intellectual Disability in Children’s Literature (DeWelles, 2019). This article contains a revised version.

[3] The following sections on simulation and the question of “what’s it like” originally appear in Narratives of Down Syndrome: Representations of Intellectual Disability in Children’s Literature (DeWelles, 2019). The chapter that references simulations is entitled “The Making of the ‘Problem’ of Down Syndrome.”

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