Ever-present in our world are texts. Whether they are print-based, multimodal, or constructed through language, texts shape the ways in which we interact with the world. Because people are simultaneous consumers and producers of texts, they should critically analyze the texts that are created in an effort to recognize the people and ideas they promote, silence, and contextualize in specific ways. This analysis draws on Critical Disability Theory within the framework of Disability Studies to analyze the 2019 young adult novel The Silence Between Us by Alison Gervais in order to recognize the ways in which a character who identifies as Deaf is represented. This author’s work is situated within multiple models that can be used to conceptualize ability and exceptionality, and it can be considered in conjunction with other analyses of texts that represent characters with a variety of abilities in an effort to highlight current attitudes toward and ways of thinking about the concept of disability and “disabled” individuals’ places in the world.

Disability Studies

Diverging Perspectives: Medical and Social Models of Disability

Disability is a term that is difficult to define given its complexity and the individuality of what it means to live as a person who has a disability. Because of the deeply contextualized nature of the lives of all individuals, including those who have disabilities, describing those experiences in ways that are true across multiple situations can be a challenge. Attempts to do so are relatively new, with the rise of Disability Studies beginning within the past few decades. This field of study began to validate the importance of thinking about the lives of a group of people who had previously been silenced and hidden from society, focusing on the lived experiences of people who have disabilities. It also worked against the notion of a fixed definition of disability, instead preferring to situate the experiences of people who have disabilities in specific contexts. There are several models of disability that have been theorized over the years, each with a unique emphasis on how to improve the lives of people who have exceptionalities. The medical and social models have been the most dominant models in the field since its inception, with the medical model preceding any consideration of social context. The medical model defined the field for many years and focuses on the biological differences of people who have disabilities. It conceptualizes disability as a tragedy or problem within a person’s body or mind that medical professionals should attempt to solve (Beaudry, 2016). At the height of the medical model, Disability Studies also revealed that people with disabilities were often viewed as objects, and those who did discuss people who had disabilities at all tended to focus on how their existence affected their families and those around them (Watson, 2012). Within the medical model, disability is often seen as a burden on individuals and families that should be fixed through medical expertise and intervention.

Over time, conceptualizations of disability have changed in ways that show increased recognition of the role of society in the construction of disability and of the importance of the lived experiences of people who have disabilities. As critical analysis of disability became more prevalent, the medical model of disability came under fire, with scholars taking issue with the negative discourses, pessimism, and blame embedded in the model. Scholars also began to notice that this model did not align with what they noticed when working with people who have disabilities. For example, when looking at disability in conjunction with a lens of culture, McDermott and Varenne (1995) found “not broken persons but identifications neatly tuned to the workings of institutions serving political and economic ends through formal educational means” (p. 344). They did not see disability as a personal tragedy confined to the body, but rather as a challenge embedded in a specific context. Similarly, Collins’ (2011) research with a student identified as disabled found that he actively employed strategies to prevent marginalization by positioning himself in ways that allowed him to showcase his abilities. This highlights a level of agency and social mobility not included in the medical model, calling into question how well it represents the experiences of people who have disabilities.

Beginning in the 1970’s, the social model of disability was introduced and popularized, which looks at disability as a “lack of fit between the body and the social/physical/attitudinal environment” (Goering, 2002, p. 374), with a core understanding of this view being that it is the environment that creates barriers for people to access and engage fully in society (Preston, 2010). In the social model, ensuring all places are accessible for people with differing abilities is society’s obligation. This in turn benefits not only individuals, but also society as a whole when it is more inclusive of all people. Legislation like the Americans with Disabilities Act (United States Department of Justice, 2021) has worked to bolster this approach to disability in our society, but our society has never become wholly inclusive.

Though representative of the most popular attitudes toward disability over the past few decades, these models are not without their critics. While the medical model is often now seen as dehumanizing by those outside of the sphere of healthcare because of its refusal to look beyond the individual body in relation to what is considered to be “normal,” the social model has likewise been challenged. It has been questioned for its simplicity, with the question being to what extent it is possible to remove all barriers for all people in society all of the time (Watson, 2012). Committing to an idealized notion of disability can be difficult because there are standards that society will almost certainly fail to meet. Beaudry (2016) also highlights what many people see as a fundamental flaw with the social model, describing that the dichotomy it creates between biological impairment and disability and its refusal to consider biological impairment as an important factor in understanding the lived experience of people who have disabilities disregards a factor that can be a significant part of a person’s life, such as if that biological impairment causes them chronic discomfort or pain. This inattention to what some people might consider to be a core aspect of their identity brings into question the ability of the social model to comprehensively describe the lives of all people who have disabilities. Though neither model is without its limitations, the medical and social models have been the most prominent theories to shape ideas about disability and show how society has been able to conceptualize disability thus far.

Critical Disability Theory

Born out of and building on many of the key components of the social model of disability and Disability Studies is Critical Disability Theory (CDT), which is a version of critical analysis that specifically attends to disability as a social construct that results from the interaction of various factors such as an impairment, a person’s response to an impairment, and the environment. CDT separates itself from other lenses on disability by taking a more intersectional approach which recognizes that disability is produced in the context of other identities such as race, class, gender, nation, and sexual identity (Erevelles & Kafer, 2010) where there is no one definition of disability (Garland-Thomson, 2002; Kafer, 2013; Pothier & Devlin, 2006). Instead, the “social system” (Schalk, 2017, para. 4) of disability is produced when the environment fails to meet the needs of individuals in that context.

Hosking (2008) describes seven elements of this theory, which include alignment with the social model of disability, multidimensionality, valuing diversity, rights, voices of disability, language, and transformative politics. These elements explain CDT’s value for the multiplicity of the interconnected memberships to social groups people who have disabilities maintain, as well as for celebration of difference, equity for all people, making spaces for people with disabilities to share their perspectives, critical analysis of language used to describe the lived experiences of disabled persons, and the exposure of how power structures that privilege and oppress are created and maintained (Hosking, 2008). At the core of CDT are expectations for activism to educate and work against conditions that produce disability (Hamraie, 2016; Minich, 2016) and collaboration with others in the service of social justice (Sleeter, 2010). The operationalization of CDT for use in discovering the messages about disability that are promoted in our society requires attendance to all of these aspects.

While there are some aspects of CDT that exist on a spectrum and may be difficult to measure (e.g. valuing diversity and language), others are noticeable inclusions or exclusions in the experiences of people who have disabilities. According to Hosking (2008), one of the major tenets of CDT draws on specific principles about disability that accept

(1) disability is a social construct, not the inevitable consequence of impairment, (2) disability is best characterised as a complex interrelationship between impairment, individual response to impairment, and the social environment, and (3) the social disadvantage experienced by disabled people is caused by the physical, institutional and attitudinal (together, the ‘social’) environment which fails to meet the needs of people who do not match the social expectation of ‘normalcy’ (p. 7).

By recognizing disability as “a place of oppression but also possibility” (Goodley, Lawthom, Liddiard, & Runswick-Cole, 2019, p. 988) and by drawing on the voices and experiences of people who have disabilities, desiring to understand a comprehensive view of their lived experiences, and seeking transformation in society that leads to inclusion, CDT is a helpful framework through which to analyze texts of all types for the ways in which they promote and/or push back against these goals.

Analyzing Disability in Texts

For several decades, the field of Disability Studies, which includes CDT, has been useful to help better understand the multifaceted lives of people who have disabilities. Many studies (e.g. Ganahl & Arbuckle, 2001; Preston, 2010; Adomat, 2014) use this lens or its principles to guide and frame their analyses of the conceptualizations of disabilities in texts, investigating messages in television advertisements, children’s films, and children’s literature respectively. Overall, the findings of these studies show that further consideration of the authentic representation of people who have disabilities in children’s literature is necessary. In some texts, there is an absence of characters who have disabilities altogether. This lack of representation can act as a silencing, indicating that these individuals require no consideration in our world. Other times, when disabled characters are included in the text, they are relegated to supporting roles (Aho & Alter, 2018). This is problematic because it sends the message that people who have disabilities are not worthy of full consideration, but they are useful to make the stories of non-disabled individuals more interesting or well-rounded.

In other instances when characters who have disabilities are positioned as main characters in texts, researchers have found that many times, these representations are troubling. Aho & Alter (2018) describe picture books like Susan Laughs and My Pal, Victor, which omit any mention or depiction of a character’s impairment until the last page, when there is a reveal of the impairment the character had all along. While likely hoping to minimize the importance of disability in the name of inclusion, this move can instead promote the message that disabilities should be hidden, which can diminish the importance of an integral aspect of a person’s identity. Texts like these also neglect to take into account the true lived experience of a person who has a disability, who cannot pretend to not have an impairment and escape the effects of it.

Moreover, instead of hiding disabilities, some texts take a different approach and highlight characters’ disabilities, but they often do so in ways that are damaging. In an analysis of several fairy tales by Hans Christen Anderson, Yenika-Agbaw (2011) found that texts like The Little Mermaid and Little Tiny or Thumbelina are composed mainly of ableist ideology that show characters who have disabilities as objects of amusement or pity. Evident throughout the analysis of these texts is the finding that the language of inclusion and empowerment of people who have disabilities that often permeates policy and school contexts has not yet permeated the world of children’s literature in significant ways.

Analyses of texts like young adult literature and television shows have also been conducted, and these analyses offer some positive points about the representation of characters who have disabilities. Examining several young adult texts like Jerk, California, Marcelo in the Real World, and Five Flavors of Dumb, Curwood (2013) acknowledges that the texts she analyzed offer realistic depictions of characters who have disabilities and end on a note of empowerment for these characters. With regards to representation in popular television shows, Hasson (2015) found in shows like Parenthood, Glee, and Breaking Bad, there are common themes of bullying of individuals who have disabilities, but there is usually also an emphasis on inclusion. In this regard, the media has accepted and seeks to describe the reality that many people who have disabilities face, and it also tries to emphasize that those obstacles can be overcome through inclusion by non-disabled peers. This does also raise the question, however, if the opposite message is also portrayed in television shows. How often are people with disabilities represented living happy and safe lives without necessary association with non-disabled peers?

Despite the evolution that has occurred in the representation of disability in some types of texts, there is still additional room for growth. Exploring all representations of disability in text is necessary, even if they are not ideal, as these portrayals of disability provide “a fulcrum for identifying the culture that might be rather than that which is” (Mitchell & Snyder, 2000, p. 45). We must analyze depictions of disability in texts in ways that accept its complexity and deeply contextualized nature.

Deaf Culture

As with any social category, individuals have the choice to accept or deny membership in that category, which often shapes views about personal identity. With regards to disability categorization, Deaf culture has become one of the most well-known social categories because within this category, there is a distinction between “deaf” and “Deaf.” In their text Deaf in America: Voices from a Culture, Padden & Humphries (1988) describe the distinction between these two terms, explaining that

We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture. The members of this group...have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society (p. 2).

The National Association of the Deaf (2019) highlights this same language in their “Community and Culture” outreach, showing their support for this conceptualization of Deaf culture and those people who identify as Deaf. At the core, many members of the Deaf community view their deafness as an integral part of their identity which affords them membership in Deaf culture. They also reject messages that tell them there is something “wrong” with their deafness or that they are missing out on anything because of their hearing loss. For many members of the Deaf community, this also involves resistance to using technology that aims to “cure” hearing loss, such as the cochlear implant, which can restore hearing for some individuals and allow them to hear spoken language. Members of the Deaf community have compared the expectation for all eligible individuals to get cochlear implants to “genocide” of their culture (Sparrow, 2005, p. 135), viewing the expectation that they get a cochlear implant as an attack on and an attempt to dissolve Deaf culture, which they view as a minority cultural group. Participating in Deaf culture is a matter of personal choice, and this choice is highly protected by members of this group.

The Silence Between Us

The Silence Between Us by Alison Gervais (2019) is a young adult novel that tells the story of Maya, a high school senior whose family moves from New Jersey to Colorado when her mother changes jobs. Maya approaches the move and the beginning of her senior year of high school tentatively, as it is the first time she will be attending a “hearing” school. Throughout the text, Maya navigates several challenges including making friends at her new school, dealing with her teachers’ approaches to teaching a Deaf student, applying for jobs to ease the pressure of her family’s financial situation, her brother’s Cystic Fibrosis, beginning a relationship with a “hearing boy,” and applying to college to become a respiratory therapist.

Maya makes friends at her new school, and they begin to learn sign language to communicate with her more effectively. Her classmates and teachers become more comfortable with her having an interpreter in class each day, and she realizes that a relationship with someone who can hear well is something she can have while also having hearing loss. She also experiences the lows of not being able to communicate with hospital staff when her brother has a medical emergency, likely but difficult-to-prove discrimination when she applies for her first job, a lack of understanding by others about her decision to forgo getting a cochlear implant, and the news that a lack of interpreters available in colleges may force her to delay her plans for college. In the end, Maya attends college, constructs a life for herself in the “hearing” world, and begins to merge that life with aspects of her old life, building a life that encapsulates both sides of herself.

The Silence Between Us is an important novel for many reasons, with a major strength being its authenticity. In an interview with the organization We Need Diverse Books, author Alison Gervais shared that she is hard-of-hearing, and that her time as a Deaf Services Specialist gave her the perspective and background knowledge needed to appropriately describe the obstacles many D/deaf and hard-of-hearing people face in the world (We Need Diverse Books, 2019). Drawing on her personal understanding of both the D/deaf community and the hearing community, Gervais is able to portray the perspectives of both D/deaf and hearing characters in ways that are honest and relatable. An analysis of this text through the lens of CDT demonstrates the helpful ways in which disability can be conceptualized when the author has an authentic understanding of the implications of their work.

Conceptualizations of Disability in The Silence Between Us

Disability as a Social Construct, Not the Inevitable Consequence of Impairment

When analyzing a text for its representation of disability, there are moments when disability is present, and moments when it is absent. One of the foundational tenets of CDT describes disability as a social construct, not the inevitable consequence of impairment (Hosking, 2008). Given the social construction of disability, there are times when people who identify as having an impairment are not disabled by their environment. For example, in The Silence Between Us, Maya describes her education at Pratt School for the Deaf, which she attended after losing her hearing as a result of contracting meningitis at thirteen years old. She explains that 90% of the staff were D/deaf of hard-of-hearing, and that those who were not knew ASL. In this context, Maya was not disabled because she could communicate effectively with everyone at the school regardless of her hearing loss. Maya is also not disabled in several other environments that she enters during the text, including when she is in the car communicating with her brother Connor by writing in a notebook, when she is at home signing with her mother, and when she video calls a friend who also signs. Maya is able to fully participate in these interactions because each environment is constructed in a way that meets her needs; therefore, she is not disabled in those environments. She is able to communicate and interact fully despite her hearing loss.

Environments can become disabling, however, when the ways in which those spaces are being navigated by participants change. For example, Maya describes eating dinner with her family, and she is unable to understand the conversation going on between them because they are not signing at the same time. Maya admits, “every so often I would look up and see Connor in conversation with Mom, and then I would feel that little twinge of sadness I always did when my family was speaking around me and I didn’t have any idea what they were saying” (Gervais, 2019, p. 43). In this moment, Maya was disabled because she was not able to fully participate in the interaction as a result of change in the environment. Because of the speed with which environments can change from meeting an individual’s needs to not meeting their needs, it can be difficult to assign a label of “disabling” or “non-disabling” to any given context. Disability results from actions within a context, not from the mere presence of an impairment.

Disability as the Interrelationship Between Impairment, Response, and Environment

The ability to decide the degree to which environments are disabling or not becomes even more complex when considering the innumerable and unpredictable ways people can respond to different interactions and environments. Hosking (2008) describes a second consideration of CDT as conceptualizing disability as a complex interrelationship between impairment, individual response to impairment, and the social environment. Understanding disability in this way requires consideration not only of the social environment, but also the actions and language of people moving within those spaces, especially when they are in response to an individual’s impairment. When Maya begins attending Engelmann High School, she is apprehensive about her peers’ perceptions about her, specifically because of her preference to sign instead of using her voice and her inability to hear their oral language. During one of her first interactions with the students, she is faced with a response to her impairment that she finds troubling and isolating. Sitting at a table of students eating lunch together, Maya is not disabled at first because she can lipread what the students are saying and she is not attempting to respond to them. When a student, Beau, begins to speak too quickly for her to lipread, however, she uses her voice to remind him that she is Deaf in an effort to encourage him to slow down. Instead of continuing the conversation at a slower pace as expected, however, Beau questions “You can talk?” (Gervais, 2019, p. 36). Beau’s response is disabling because it positions her as an outsider amongst all of the other students, highlighting what he expected she would not be able to do, rather than responding to what she can do. In this situation, Maya has no control over how she is perceived, and the responses of others toward her ability to speak shape the interaction.

When a person’s response changes in a situation, though, that context can become non-disabling once again. The next time Beau sees Maya, there is a similar exchange, but a different response changes the trajectory of the interaction. Waiting for a class to begin and before her interpreter arrives, Maya and Beau sit in a classroom surrounded by the discussions of other students. Beau is not fluent in ASL, and Maya can lipread when people speak slowly enough. The context is very similar to that of the lunchroom. Maya lipreads that Beau is asking what he did wrong the previous day, and she uses her voice to communicate that she understands he is apologizing for his behavior. She also uses her voice to recommend that he search for guidance about things he should not say to D/deaf people. This time, Beau responds to Maya’s use of her voice by responding to what she said aloud, saying what Maya understands as “Right. Maybe I…look that…too” (Gervais, 2019, p. 48). Beau’s response accepting Maya’s use of her voice as well as of his wrongdoing made this interaction into one in which Maya is not disabled. Beau also continues to respond in this way in their subsequent interactions, allowing them to become friends and eventually begin a romantic relationship.

Though other people’s reactions are constantly affecting the inclusiveness of situations for Maya, Gervais’ (2019) decision to characterize her as a character with agency gives her the power to encourage and cultivate more inclusive responses by other characters in the story. In a situation not unlike that with Beau, Maya lipreads a student, Jackson, say to a classmate that Beau is only pursuing a relationship with her to “get brownie points for dating a disabled chick” (Gervais, 2019, p. 283). Maya immediately addresses Jackson’s comment, waving off his apology and telling him, “I want you to understand that I’m not disabled. Literally the only thing I can’t do that you can is hear” (Gervais, 2019, p. 283). In this case, Maya takes an active stance in pushing back against others’ perceptions of her abilities. Unlike in the lunchroom, Maya responds to Jackson’s comment in a way that takes the power away from him, positioning her as a non-disabled individual through both her decision to contradict him and her language choices. During this interaction, Maya’s response shapes the other students’ perceptions of her and of disability, drawing a line between them and showing that she is not disabled in all situations at all times.

While there are several times when Maya must react to an environment that seeks to position her as disabled, there are other instances when others’ responses to her give her a new level of freedom. Throughout the text, Beau learns and communicates with Maya through sign language with increasing frequency. They are able to have discussions in sign language, and he is able to act as an interpreter for her when Connor has a medical emergency and the technology at the hospital meant to help interpret stops working. In these interactions, Beau’s choices about how to communicate with Maya make it so that her preferred method of communication, ASL, is the norm. When there is a harmonious relationship between her impairment, Beau’s responses to it, and the environment, she is not disabled. Given the complex and fast-changing relationship between these factors, Maya must always be ready to respond to others’ responses to her abilities in order to control how she is viewed.

Social Disadvantage as a Product of the Environment’s Expectations for Normalcy

Regardless of the interplay between impairments, responses, and environments, CDT is based on the understanding that there is one norm that is most often perpetuated in social situations, which favors the abilities and desires of individuals who do not have impairments. To describe this tendency for social interactions to cast people who have disabilities as “other,” Hosking (2008) describes that “the social disadvantage experienced by disabled people is caused by the physical, institutional and attitudinal (together, the ‘social’) environment which fails to meet the needs of people who do not match the social expectation of ‘normalcy’” (p. 7). Because of this expectation for ‘normalcy,’ it could be argued that people who have disabilities are automatically disabled in some way because they fail to meet this expectation. There seems to be a spectrum, however, against which situations can fall to describe the degree to which they are disabling.

In relation to the ways in which many characters who have disabilities are often described in texts, Maya has an abundance of agency and power. As the main character in a text whose impairment is not hidden from the reader, Maya is unapologetically situated so that her abilities cannot be minimized or ignored by the reader. Maya’s abilities to interact with both disabled and non-disabled peers in a myriad of ways, as well as her strong and relatively assertive personality, make it so that Maya can influence others around her instead of always being subject to their perceptions. Maya is also supported by numerous characters who surround her including her mother, brother, an old friend Melissa, her school interpreter Kathleen, and her guidance counselor, who never even hints that Maya would not be able to attend her college of choice because of her hearing loss. Other characters, like her friends Beau and Nina, grow in their support over time. With these supports in place who appear to have little concern about interacting with Maya in ways that are not the norm, Maya is well-suited to push back against rhetoric of disability that seeks to limit her choices or skew perceptions of her abilities.

While Maya has a strong support system that is consistently comfortable with her and her needs, Maya is challenged by the broader world outside of this network of support. One challenge Maya faces surrounds perceptions of her abilities as an employee. In an effort to gain extra income for her family to pay for her brother’s medical bills, Maya applies for a position as a barista at a local coffee shop, and does not mention her hearing loss. She is quickly contacted for an interview, which she accepts. In her initial application, Maya was viewed as a capable and promising applicant the employer could see working at the shop. In her reply, however, Maya mentions her hearing loss, use of sign language, and need for an interpreter. She then receives an email stating that the position was filled. Given the exchange of information that occurred, the reader is left to surmise that it was the knowledge of Maya’s hearing loss and communication method that caused the employer to lie about or quickly hire someone else into the position.

Many clues in this situation point to the employer’s expectations of their employees and about D/deaf individuals as being disabling for Maya. In her initial application, she was likely assumed to be “normal,” or to have average hearing ability and to communicate through speaking and listening. When she supplies information to the employer that contradicts this expectation, she is socially disadvantaged and released from the application process, leaving her without employment. The employer’s expectations about the abilities of their applicants inhibit Maya’s ability to provide for herself and her family.

Expectations for normalcy can surround perceptions of ability, and they may also include expected attitudes toward disability. Throughout the text, Maya clearly states numerous times that she does not want to get a cochlear implant. She shares this choice with characters like her mother, doctor, and Beau, signing “Like myself D/deaf” and stating “it’s not for me” (Gervais, 2019, p. 242, 250). Beau, however, has a difficult time accepting Maya’s choice and forces the matter, giving her information about cochlear implants as part of her birthday present. Beau seems to believe the correct response of a person who has an impairment who gets the opportunity to learn more about technology that could compensate for that difference in ability would be to jump at the chance. Because Maya does not do this, Beau tries to force his perspective of a cochlear implant being a positive choice for her despite her wishes. His attempts to give this information and convince her to change her mind position her as less knowledgeable than he is, which isn’t necessarily true, especially about that topic. When new information and choices present themselves in Maya’s life, she has to continue to fight for her perspective to be heard and understood, even sometimes by those people who are part of her support network in other contexts.

As Maya prepares to graduate high school and move on to the next stage of her life, it is clear that she will continue to face perspectives about normalcy that threaten to hold her back. After gaining admission to her school of choice, which is a “hearing” university, Maya meets with college personnel to discuss her need for an interpreter in her classes. The college administrator admits, however, that there is a wait list for interpreters, and she is not sure how long it will take to secure one. This could delay Maya’s ability to begin classes. Her mom interprets and signs the administrator’s excuse that “Not a lot o-f interpreter here for education right now” (p. 258), blaming the school’s lack of resources on a lack of qualified candidates.

Regardless of whether the university or the workforce are to blame for the understaffing of interpreters, this highlights an issue in society as a whole. Either people are not learning sign language or colleges do not feel the need to hire a sufficient number of interpreters to meet the needs of their students. Either way, it is apparent that there is a rampant expectation that people do not need interpreters to communicate. This expectation of normalcy has either dissuaded people from learning to sign or universities from hiring those who can. Because of this expectation, Maya, likely along with several other students, faces the disadvantage of possibly not being able to take the courses she needs to take when she needs to take them to further her education and begin her career. While the reader does find out that Maya was able to begin college the following year, this appears to be a product of luck or chance, not planning. By pointing out this issue, Gervais (2019) points out a perception of most people in society that learning a language that would increase inclusivity of people who have hearing loss is not their responsibility. This perception is still likely to affect Maya long after her college days are through.

Discussion and Implications

In her text The Silence Between Us, Alison Gervais describes the thoughts and life of a young woman named Maya as she navigates the end of high school and the beginning of college with hearing loss. When analyzed through the framework of CDT, this text highlights the complexity and contextualized nature of experiences of disability. An analysis of this text demonstrates the ways in which Hosking’s (2008) three tenets of CDT are helpful in describing how Maya’s abilities shape her interactions with the world, including noticing the interactions between impairment, response, and environment. Gervais’ (2019) text is multidimensional, in that Maya is both negatively and positively affected by the interactions of these factors in ways that are disabling and non-disabling when they are present and absent.

When considering this text in relation to others that have represented people who have disabilities in the past, it is clear that some authors can represent characters with disabilities as complex individuals who have choices, opinions, and agency. Gervais (2019) does an exceptional job with this, and her work shows readers and other authors that they, too, can think and write about people who have differing abilities in ways that go against what has been the norm for too long. Given that nearly 13% of the population identifies as having some sort of disability (Kraus et al., 2018), this move toward inclusivity can have a positive impact on the lives of many people. Society is beginning to change the ways in which it sees disability, and individuals can advocate for texts of all kinds that include and fairly represent the experiences of people who have a variety of abilities.

If some authors do understand that people who have impairments are not disabled in all situations and that individuals who do not have disabilities play a significant role in shaping the experience of those who do, readers must consider the factors in play that affect the extent to which these authors can share their perspectives and voices. Authors coming from historically marginalized backgrounds, like Gervais, may have the strongest, most authentic stories to tell that will help readers develop more inclusive views about different groups of people, including those with differing abilities. However, a lack of diversity still seems to permeate the field of publishing. A recent study by publishing company Lee and Low Books surveyed 44 publishers and review journals and found that only 7.6% of the staff identified as having any type of disability (Low, 2016). This minuscule representation likely represents many publishers’ attitudes toward the inclusion of people who have disabilities in the field of publishing, and likely also affects the abilities of authors from diverse backgrounds to share those stories. Representing diversity does not appear to be a priority to many people in the field of publishing whether through hiring or the books that are published.

Some organizations have taken action to encourage the writing and publishing of texts that represent diversity. For example, the National Council of Teachers of English (2015) passed resolutions that advocate for more books that reflect culturally diverse lives and experiences, and it makes a point to highlight and support authors, illustrators, publishers, and booksellers whose work represents multiple perspectives and cultural diversity. Other organizations focus specifically on encouraging the respectful and authentic representation of individuals who have disabilities in text. For example, The Dolly Gray Children’s Literature Award (Brigham Young University, 2020) and the Schneider Family Book Award (American Library Association, 2021) honor books that include and highlight individuals with developmental disabilities and the disability experience respectively. Additionally, the Barbellion Prize (National Centre for Writing, 2021) is awarded to authors whose work represents the experience of chronic illness and/ or disability. While these awards are certainly valuable incentives to encourage aspiring writers to authentically represent the lives of people who have disabilities in text, it will take time for a wide range of quality texts to be written and published. For the time being, readers will need to find ways to build inclusivity using the texts that are already available.

In order for fair and accurate representation of people who have disabilities to increase in texts, there must first be social change to increase the representation of people who have disabilities in society. This necessitates the participation of several stakeholders who have an interest in social justice and equity. The first group who may have a chance to help the next generation grow up with a value for fair representation and a curiosity for understanding the experiences of others are teachers. Teachers must make time for, find, and draw on texts like The Silence Between Us to begin discussions with children and adolescents that give them safe spaces to talk through the messages they have heard about people who have disabilities and clarify any misconceptions they may have. As these youth move into adulthood, they will hopefully bring with them a value for inclusivity, and begin to inspire change that increases the presence of people who have disabilities in society. Ideally, this would then increase representation in historically exclusive industries like publishing, and then in the products they produce like texts and media. This may not be a quick change, but it will be one worth the time and attention.

There are several ways in which Gervais’ (2019) The Silence Between Us may be utilized in the classroom. Most basically, it offers opportunities to create a dialogue with students about their knowledge, biases, assumptions, and questions about ability. Because this text is most appropriate for young adult readers, students reading this text have probably had experiences with individuals with disabilities and have likely used those experiences to develop expectations about interacting with people of this population. These views may or may not represent what would be considered to be a well-rounded view of disability, and teachers can help promote this development by encouraging students to share their thinking and respond to others’ thoughts. Students may be most comfortable with opportunities to talk about disability in the context of this book first, including the characters’ actions and what they surmise to be the author’s point of view, before discussing their own interactions and assumptions. Some discussion prompts specifically related to this text that may be used to foster a conversation include

  • How does Maya’s hearing loss affect her life?

  • How might society be changed to prevent the challenges Maya faces?

  • How do the characters treat Maya throughout the text?

  • How do you think the characters learned to treat Maya in those ways?

  • What role does Maya play in shaping how others treat her?

  • How would Maya describe her abilities?

  • Who should read about a character like Maya?

  • How does the author define dis/ability?

  • In what ways do you relate to Maya?

Discussion of the text through these prompts will likely also inspire discussion of comparisons, conflicts, and shared experiences, allowing the teacher to begin to understand each student’s viewpoint about ability. From there, responsive instruction can be planned that will help students develop views about ability that are rooted in equity and social justice.

While teachers have opportunities to inspire conversation with children using groundbreaking texts, they must also be supported by other stakeholders like parents and researchers. Parents have the power to reinforce or denounce messages children hear in school, and they must choose wisely and respond to their children in ways that acknowledge the need for representation of diverse characters in texts. This can help show that there are real-world equivalencies of the challenges faced by characters in books. Researchers can also support teachers by making statistics about trends in representation available to show progress that is being made, as well as by highlighting texts that push back against common representations of people who have disabilities and show characters who humanize the controversial label of “disabled.” Texts like Gervais’ (2019) have made it through the publishing process, so they must be used in thoughtful ways to ensure they have the impact of a hundred books that should be, but that have not yet become accessible to the world.

Gervais’ (2019) book The Silence Between Us conceptualizes disability in a way that highlights the challenges that society has constructed and actively constructs for people who have impairments, and also shows how people like the main character can navigate those challenges when they are given the power to do so. It can be used to begin conversations about these barriers, power structures, and responsibility for breaking them down. If used thoughtfully, this text could also be used to educate, broaden mindsets, and move toward a more inclusive society, at both personal and public levels. Disability is a label that often carries with it a set of implications for life. With the right resources and conversations, society can realize that this way of life does not have to be any different from a non-disabled way of life.