AFFIRMATIVE REPRESENTATION: A FOUNDATION IN FORM AND CRAFT FOR WRITING DISABLED CHARACTERS by MaKayla Martinez A thesis submitted in partial fulfillment of the requirements for the degree of MASTER OF ARTS IN ENGLISH WEBER STATE UNIVERSITY Ogden, Utah April 16, 2025 Approved: ______________________________ Megan Van Deventer ______________________________ Rebekah Cumpsty ______________________________ Chris Scheidler AFFIRMATIVE REPRESENTATION 1 Introduction As a disabled reader and a writer myself, I’m disappointed in the representation of the disabled community in children’s and young adult literature from years past. I am encouraged by the push for not just more representation, but more accurate and sensitive representation. However, in my research, I have found that the push to hear from disabled authors, while imperative, has also created a fear in non-disabled authors of writing disabled characters. The question is no longer “What story shall I tell?” but “What story do I have a right to tell?” This misses the point. I am baffled at the ability of a movement such as ‘#ownvoices’ (Duyvis, 2015) to continue centering the dominant white, non-disabled experience by focusing on who is not allowed to write a story. The point is as simple as this: disabled people exist. No matter the story, no matter the world, they exist. Any story wherein they do not exist or appear is really only a smoothed and fabricated version of reality. Real representation is the presence of disabled characters, even in stories that do not center their experience; it’s disabled characters written by disabled authors alongside disabled characters written by non-disabled authors. This research follows Annette Heim’s work, who laid out five guidelines for evaluating disabled characters (Carroll & Rosenbaum, 2000). Heim suggested that good representation should 1) use accurate information, 2) avoid stereotypes, 3) be well written, 4) be realistic and 5) avoid using the disabled character simply as a plot device (1994). My research aims to offer a more specific set of techniques focused on craft choices and forms which will encourage non-disabled authors to include a larger array of disabled characters. By close-reading and analyzing texts that showcase high quality disability representation, these guideposts, based on successful techniques and identified writing patterns, outline how to craft high-quality, affirmative representation. AFFIRMATIVE REPRESENTATION 2 Theoretical Framework The following project does not attempt to address or reframe the theoretical models (i.e. the social or medical model) of disability as established by disability studies scholars (Metheny, 2024). The scope of this project is to find good representation that accurately portrays disability, defined by a focus on disability pride and community, as well as emphasizing an individual’s experience (Metheny, 2024). Traditionally, a number of tropes and stereotypes have plagued disability representation. Three common tropes present themselves: the ‘super-crip,’ (the superhumanly content or long-suffering character), the ‘myth of a cure’ (the idea that the disabled character will die or somehow become non-disabled by the end of the story), and the ‘convenient disability’ (the idea that a character’s disability comes and goes when it’s convenient for the plot) (Metheny, 2024, p. 12). In 2000, John Swain & Sally French defined the ‘affirmative model of disability,’ which is a “non-tragic” view of disability and impairment that includes positive individual and social identities, pushing back on the dominant individualistic models they had used in their previous work, which viewed being disabled as a personal tragedy. They challenged those models by “validating [the disabled] and their experiences” (p. 569 - 570). Metheny (2024) built on their ideas by describing the affirmation model in four distinct pieces: (a) acknowledging the social construction of disability, (b) fostering a collective group identity, (c) experiencing “frustration and anger” with disability and disabling contexts/systems, and (d) embracing the right to be a cultural “insider” rather than an “outsider” (p. 14). AFFIRMATIVE REPRESENTATION 3 In the following sections, I will use this four part rubric, based on the definitions put forth by Swain and French (2000) and Metheny (2024), to analyze texts for ‘affirmative representation,’ which is the term I use to describe texts which take a view of disability congruent with the affirmative model. For the purposes of this project, however, I will combine (b) and (d) of Metheny’s description into a single category to describe a cultural and collective group identity. Methods The goal of this project was to directly challenge the trope of the ‘convenient’ disability, by looking for and encouraging more accurate and immersive disability representation. My experience of disability is all-encompassing. It affects every part of my life, and it is a part of my identity. I wanted to find texts that understood the full experience of being disabled, that portrayed the disability all the way through the story and never let the reader forget about it. To do this, I looked for texts that were already committed to immersive storytelling by quantifying the immersion of each novel. After that analysis, I took the results and chose mentor texts to identify techniques and author choices that contributed to the immersion of the disabled experience. These were distilled into five guideposts intended to allow authors to anchor themselves in affirmative representation as they include more disabled characters in their work. These guideposts endeavor to give writers confidence to add disabled characters into stories, reflecting the real existence of disabled people in the real world. I utilized a mixed methods approach, applying both quantitative and qualitative measures of analysis. The quantitative analysis was based on how much of the story was dedicated to representation of the disabled experience, assigning each an ‘Immersion Score. (IS)’ Borrowing Franco Moretti’s (2013) network theory to analyze the data, I counted the frequency of representation, which was the number of times that disability affects the character or the dialogue AFFIRMATIVE REPRESENTATION 4 or the decision making of the disabled character or the characters around them. Network theory allows us to quantify qualitative properties, creating networks across texts, but unfortunately it does lack any way to add weight or depth (p. 214). Therefore, my network was simplified to count the pages with direct mentions of the disability. This allowed the same methodology to be applied to each text in the same way. For the qualitative analysis, I selected texts that offered representations rooted in the affirmative model of disability. I studied the two novels who ranked the highest in the Immersion Score table, looking specifically for the evidence of affirmative representation as described above. Once a text was selected, critical content analysis (CCA) was employed to identify and categorize author choices that contributed to positive disability representation. CCA is an approach that relies on critical theories to analyze a text through social, cultural and political contexts, like disability studies (Short, 2017) This project drew heavily on the theory of affirmative disability when analyzing the content of the text. I identified several craft and form techniques that contribute to affirmative representation. This is intended to offer a tool for authors to critically craft disabled characters by offering guidance so non-disabled writers are encouraged to add diversity to their casts. Text Selection In searching for texts to include in my survey, I utilized the two most accessible resources: the internet and the local library. My local youth librarian provided me with a website, Disability in Kid Lit (disabilityinkidlit.com), which hosts an honor roll of titles that are read, vetted and reviewed by disabled readers and authors. It features full length reviews, tags, and filters that allow you to search by genre or specific disability. The site has not been updated since AFFIRMATIVE REPRESENTATION 5 January 2018, so I had to look elsewhere for more recent titles, but nearly half of the books in my survey are residents of this list. Further, my local library also published their official reading list for disability awareness month in October, containing about ten titles, and made it publicly available. Several of these titles appear in my survey. Lastly, I did some old-fashioned thumb flipping and the digital equivalent, targeting keywords in a search engine. The books here included in the survey were chosen in order to provide the widest array possible across a number of criteria. The first consideration was of course the type of disability represented, to include the largest possible spread of visible and invisible disabilities, disabilities that are often talked about as well as disabilities not as often in the public eye. I also tried to select texts from a wide selection of genres, author identities, and structures.The author identities included disabled authors who mapped their own experience onto the characters identity (7), disabled authors who did not (2), as well as non-disabled authors (5). With respect to genre, fantasy (11), horror (2), romance (1), magical realism (6), alternative history (3), and contemporary fiction (9) are represented. I read books with male characters (4), with female characters (8), multiple main characters (7), characters who are aware of their disabilities (13) and characters who aren't (5). Quantitative Analysis or Immersion Score Disability is, by definition, an all-encompassing experience, so for a quantitative understanding of the texts, determining the number of times that disability was included gave a wide view of how immersive the disability representation was and, by extension, a reflection of the character's disabled identity. To do this, I assigned each novel an ‘Immersion Score.’ I counted each page with a direct mention of the character's disability. I defined a direct mention as anytime a disability, an accommodation, or a symptom is mentioned by name. For example, a AFFIRMATIVE REPRESENTATION 6 character might have a limb difference, so the description of the character would count as a mention, but so would his limp or the ramp required to travel upstairs. Any allusions subtler than this were not counted in order to maintain the methodology across the texts and avoid personal bias. I took that number and divided it by the total number of pages in the story, producing the following equation: Pages with direction mentions \ Total pages = Immersion Score The Immersion Score is by no means the definitive characteristic of affirmative representation, but a real disability doesn’t turn on and off for the convenience of the plot. A disability, by definition, is constant, ‘immersive.’ The hypothesis was that the more an author committed to the representation, by spending precious page space on it, the more disability is integrated into the character and therefore more ‘affirmative.’ On the whole, the higher the immersion score the more the book aligned with the characteristics of disability pride, as described by the affirmative model of disability (Metheny, 2024, p. 14). Stories set in the fantasy genre typically reserved more space for worldbuilding, seeming to leave less room for representation, which lowered the Immersion Score. Conversely, stories in the contemporary genre had overall higher scores and less worldbuilding. Lastly, it seemed that characters with official diagnoses, who used medical language to describe their disabilities, had higher immersion scores. Once all the numbers had been crunched, I used this data to choose mentor texts from which to extrapolate the five guideposts. (See Figure 1.) Immersion is the goal, and so immersion was the criteria for which I searched. AFFIRMATIVE REPRESENTATION 7 Three Pieces of Affirmative Representation I identified three distinct components of the ‘affirmative’ model of disability, based on Swain and French (2000), interpreted by Metheny (2024). With a collection of novels devoted to the disabled experience, I asked, “Do any of these texts conform or engage with these pieces of disability theory?” Or rather, “How does the affirmative model of disability play out among the text set of novels that promote disability pride?” The answer was clearer than expected. Whether the authors recognize Swain and French (2000) as influences, their novels exhibit practical engagement with the theory. In this section, I will share some examples that show how fictional contemporary disability representation is in conversation with how our understanding of disability itself is changing, from a tragedy view to a non-tragedy view. (a)Acknowledging the social construction of disability. The Gilded Wolves by Roshani Chokshi (17% IS) has multiple protagonists who represent diverse experiences across race, religion and neurodiversity. The characters come together as a team to perform a heist for ancient magical artifacts. As they are putting together a plan, one of AFFIRMATIVE REPRESENTATION 8 the protagonists, Zofia, who has a processing disorder associated with her autism, describes to the reader how difficult it is for her to have a conversation: Severin was a little more difficult. He often said only half of what he meant to say, according to Laila. Hypnos, on the other hand, said all he meant to say, but Enrique had told her she was only to take half of it seriously, which made processing [emphasis added] his sentences a bit of a chore. (p. 357) Of course, this difficulty for Zofia has clearly played out in dialogue before this point of the story. However, allowing Zofia to describe it herself and how she experiences relationships, gives the reader a chance to recognize the character's agency and awareness of her own mind. It seats the reader in the immersive element of dialogue, from Zofia’s perspective and adds context to how she responds to her peers. (b) Fostering a collective group identity, and embracing the right to be a cultural “insider” rather than an “outsider.” In Karen Kane’s novel, Charlie & Frog (41% IS), she sets her mystery inside a school for the deaf and the hard-of-hearing, giving her ample opportunity to include role models for the protagonist and his best friend, Frog, who is deaf. Most of Frog’s family is deaf, and they take pride in their community, especially that in their home and school and at their business, a cafe, where only non-verbal forms of communication are allowed and almost every single scene gives us more insight into the world of the deaf, it immerses us in the community. Mrs. Castle, Frog’s mother, even takes it upon herself to be sure that Charlie understands Deaf culture, not just the language. "So, Charlie, I know Frog has been teaching you signs," Mrs. Castle said as Oliver interpreted. ''But I hope Frog has explained that signs are only part of ASL-" AFFIRMATIVE REPRESENTATION 9 “Mom.” Mrs. Castle ignored Frog. ''Because how you move your face and how you move your body are also part of our language-” "Mom! Charlie doesn't care-" "-using signs while speaking English is a way to communicate; but it's not ASL, which Frog should be teaching you-" "Mom! I am!" Frog kicked Charlie under the table. Charlie nodded vigorously. "Good," Mrs. Castle said. "That's important (p. 133)” Charlie and Frog also have several hearing role models that are instrumental in teaching Charlie how to be an ally to his new friends. Besides Mrs Castle, Millie, Frog’s younger sister, and one of her brothers who is not deaf nor hard of hearing, there are several characters who are patient enough to teach Charlie signs that he can use to communicate with Frog. They help him to understand that being deaf and using ASL is part of who she is, not just a medical diagnosis. This allows the characters to work together to solve the mystery of the missing elderly woman who attempted to communicate with Charlie before he could understand what she was signing to him. (c) Experiencing “frustration and anger” with disability and disabling contexts/systems, In Lindsay Puckett’s novel, The Odds (22% IS), the protagonist, Begonia, is depicted as a ghost, which acts as a fictional disability alongside her physical disability, migraines. At the end of the novel, she finds that her guardian, David, has known of her ‘diagnosis’ for some time, and didn’t tell her, in spite of the difficulties she now faces because of her disability. Understandably, Begonia is frustrated by this turn of events, especially since her grandmother, Babette took AFFIRMATIVE REPRESENTATION 10 advantage of the situation to take control of their home. But Puckett takes the time to describe those frustrated feelings. Just like Nana Babette’s crater, there was one in her chest for David too. Small and much less deep, but aching nonetheless. It pulled as she watched him, filled with both love and betrayal and understanding and sadness. She would give him the chance to make it right. If she had learned anything, it was that families were like gardens, and though there were thorne between them, there were roses too. The evergreen kind (pp. 255-56) Begonia’s experience with David is complicated, she is upset at his choices but she loves him. As Begonia navigates her new identity, her relationship with her loved ones changes a bit also. Puckett allows Begonia to have emotions, even negative ones, about the situation, and she doesn’t force the character to solve the problem or find closure. By not coercing a happy ending out of the story, Puckett brings it into the reality of the disabled experience. Qualitative Analysis Give Me A Sign By Anna Sortino With an 83% score, Give Me A Sign by Anna Sortino (2023) is the highest score in my survey. Now that it’s clear that the affirmative model exists within fictional disability representation, I wanted to know how the affirmative model mapped onto the most ‘immersive’ of the text set. Kirkus Reviews (2023) describes the book… AFFIRMATIVE REPRESENTATION 11 Seventeen-year-old Lilah was born severely deaf. Though she’s able to get by with hearing aids, FM units at school, and lip reading, she feels disconnected from the hearing world around her. Camp Gray Wolf, designed for deaf and blind kids, was the only place where she could use ASL and accept her deafness (2023). On the very first page, we run into the first piece of affirmation theory, (a) acknowledging the social construction of disability. No one knows my deafness as well as I do. There isn't a single test that can truly get inside my head and understand how I'm experiencing the world. Doctors, parents, and strangers like to chime in with their assumptions. But after seventeen years, I'm still figuring it all out (p. 1). Instead of just acknowledging the social construction of her disability, Lilah challenges the authority of society to construct her experience, saving that right for herself. This introductory paragraph, as well as being an excellent and succinct overview of the theme of the book, calls into question the social construction of her disability. The novel is about Lilah’s discovery of herself and her deafness, exploring how it informs and folds into her identity. In an interview with Penguin Teen (2025), Sortino mentioned that one of her goals in writing the book was to let readers “know that there's no ‘one way’ to be deaf.” Lilah explicitly takes up this mantle and challenges this narrative by explaining in the first three sentences that she won't have her disability dictated to her. The second part of the affirmative model is (b) fostering a collective group identity, and embracing the right to be a cultural “insider” rather than an “outsider.” Give Me A Sign directly engages with a ‘collective group identity’ by setting the story at Camp Gray Wolf among characters who all experience disabilities affecting their sight or hearing. Lilah’s goal in AFFIRMATIVE REPRESENTATION 12 attending the camp is to suss out her position in the Deaf community (with a capital D). The individual identity that Lilah is looking for is connected to the collective identity that she is actively fostering at camp. One feeds into the other. But even as Lilah navigates her own community and how she relates, and communicates, with others, Sortino (2023) takes the time to also define the perimeter of that community. Specifically, she speaks to the problem of non-disabled people making decisions for the disabled community. There are two such examples in the story that she calls out. Mackenzie is a counselor at Gray Wolf with Lilah. She isn’t deaf, but she’s studying to be an ASL interpreter. There is a tension between the two young women as Lilah believes that Mackenzie fits into the community better than she does. As the story progresses, a tension between Mackenzie and other characters becomes clear as well. Not because she isn’t deaf, they welcome her interest in the community, but because of how she presents herself on the internet. Mackenzie has a YouTube channel, where she teaches ASL. It’s been previously mentioned in Lilah’s journey that it is extremely difficult to find accurate sources online, due to a large number of hearing enthusiasts. As they explore the social media presence of the camp, a conversation broaches the topic specifically. You can use sign in your videos,” Natasha explains. “I’m glad you’re learning, really. I wish more people would. But I don’t like that you position yourself as someone qualified to teach ASL, because you’re not. Lessons should come from within the Deaf community in order to be accurate and properly reflect Deaf culture, not from hearing people, especially not those who are still learning (p. 211). This scene places Lilah and her friend Natasha on the inside of the community circle, rather than on the outside. Echoing the beginning of the novel and the first part of the affirmative AFFIRMATIVE REPRESENTATION 13 model, both characters take back the power for their community in asking that Mackenzie leave the education of the Deaf to the Deaf. This conversation also models healthy conversations about tricky subjects for young readers before they find themselves in the midst of them. A novel is a safe place to experience new things and learn vocabulary and techniques they can take with them into their own conversations. Less than a chapter later, Lilah imitates this conversation between Natasha and Mackenzie, but in a much more personal context: with her parents. Lilah’s brother Max, who is also deaf, joins her at camp halfway through the summer. It’s then that Lilah finds out that Max is a candidate for a cochlear implant. When asked if they are considering the surgery Lilah’s mother simply says, “He needs it to hear us” (Sortino, 2023, p. 215). The failure and unwillingness of her parents to support Lilah’s deafness is a key part of what drives Lilah to Camp Gray Wolf, and we find part three in her response, (c) experiencing “frustration and anger” with disability and disabling contexts/systems. “At the firepit last night, I told Isaac how frustrated I am that Max doesn’t seem as interested in learning ASL as I am. I guess a part of me is being selfish - I want him to learn so that I have someone at home to sign with once camp is over. But I also want him to know his communication options, especially with a big decision about a cochlear implant coming up” (p, 218). Throughout the book, Lilah becomes increasingly frustrated with the systems outside the camp that are not accommodating to the deaf consumer. First, it’s on her own behalf, then on behalf of her brother, and finally on behalf of her boyfriend Isaac who ends up in an altercation AFFIRMATIVE REPRESENTATION 14 because he didn’t hear a warning shouted to him from afar. But Sortino (2023) chooses to let Lilah sit in those frustrations, acknowledge them and share them with her friends. Last night might never have happened if I'd been wearing my hearing aids-if I had abided by the wishes of the hearing world. They want us to adapt to them so that they don't have to adapt to us. I wanted to try to embrace my hearing loss, but last night I saw why I shouldn't. (p. 245) In the end, Give Me A Sign engages with all three of the pieces of affirmative representation. Sortino made choices that allow the character to describe herself, acknowledging that her disability is socially constructed but that it shouldn’t be. The premise of the novel directly engages with the deaf community and Lilah’s journey to count herself part of it and the author allows Lilah to be frustrated when the world makes her life harder because of her disability. Hummingbird by Natalie Lloyd Now that I have identified all three pieces of affirmative representation in Anna Sortino‘s Give Me A Sign, I wanted to see if all three of these things appear in more than just one novel. Having done the analysis of the most ‘immersive’ novel, I need to know if it’s replicable. Does affirmative representation appear in other novels among the text set? The book with the second highest Immersion Score, which also happened to be my personal favorite, was Hummingbird by Natalie Lloyd (2022). With a 63% IS, the novel spends a significant portion of its space relating the protagonist's experience with osteogenesis imperfecta (OI), or ‘brittle bones.’ The novel also employs some magical and fantastical elements, so it is safe to assume that because some space is reserved for the worldbuilding required, it led to a lower Immersion Score. AFFIRMATIVE REPRESENTATION 15 Wildwood, Tennessee’s own Olive Miracle Martin is a girl of great, sparkly confidence and passions… Macklemore [Middle School] is the land of her hopes, full of potential friends and wild adventures, yet her osteogenesis imperfecta makes the prospect a challenge… In a town where vividly described magic is taken as a point of fact and white feathers fall from the sky like snow, Olive’s fairy-tale wish is for bones like steel, not glass. Now she must contend with the question of whether she should—or even wants to—be anyone but who she already is (Kirkus Reviews, 2022). The first piece of affirmative representation is (a) acknowledging the social construction of disability. In Give Me A Sign, this was evidenced in the way that the character was allowed to introduce herself, rather than being relayed to the reader through the characters and objects around them. I had to look a little farther for Olive’s introduction, but Lloyd (2022) does the same thing allowing Olive to describe herself at the beginning of the novel: It’s strange how my bones are inside my body but they’re still somehow, the first thing people see, Fragile is what I’ll always be. I get that. But I am a thousand other things, too. I’m whole constellations AFFIRMATIVE REPRESENTATION 16 of wonders and weirdness and hope. (p. 11). Olive’s introduction hints at the themes of the book. The central question, as already mentioned by the synopsis from Kirkus Reviews, is whether Olive is “more than her disability” (n.p.) or, rather, would Olive be ‘more’ without her disability. The novel engages directly with this question by introducing the magic hummingbird that can grant any wish, including ‘bones like steel’ (2022). Again, I am looking at the theme of identity and coming into oneself. Both are recurring and popular themes within both the middle grade and young adult genres, as well as within disability literature. Jen Scott Curwood at the University of Sydney said “there has been a shift away from coming-of-age stories to a focus on themes of fitting in, finding oneself, and dealing with crisis (2012, p. 18)” The similarities don’t stop there. Where Lilah’s introduction challenged the reader, which is likewise a kind of invitation, Olive expresses a desire for the reader to know her. Lines like, “I wish they’d see other things” (Lloyd, 2022, p. 10) suggests Olive's desire to be known by her peers, by her family, and even expressing a desire to know her own mind. “I’ve got a thousand tiny oceans inside me” (Lloyd, 2022, p. 11). Here in the introduction of the protagonist, Lloyd (2022) takes a different direction than Sortino (2023). Give Me A Sign is written in the typical linear fashion traditional to the novel. Lloyd (2022) breaks the form by including poetry. Poetry, especially with regard to line breaks, is what separates this passage from the novel form and is all about rhythm. It’s about drawing attention to some words and some syllables over others (Poetry Foundation, n.d.). AFFIRMATIVE REPRESENTATION 17 The effect here is that the form of the poetry itself draws attention to Olive’s thoughts, specifically how she sees herself, and in that description, I see the reflection of the theme of the novel, that being ‘broken’ can be beautiful. In both novels, the author acknowledges the social construction of disability by challenging it. They allow the character to define themselves, and both introductions reflect the theme of the novel. Lloyd (2022) takes this one step farther by choosing a form for the introduction of the disability that mimics the theme and introduction of the character as well. The second piece of affirmative representation is (b) fostering a collective group identity, and embracing the right to be a cultural “insider” rather than an “outsider.” I identified this in Give Me A Sign as Sortino’s (2023) choice to model healthy responses and solutions when Lilah, an “insider” of the community clashes with others who are “outsiders” to the community. When I looked for evidence of the same in Lloyd’s (2022) novel, I was pleasantly surprised to find that instead of modeling hard conversations, Olive is given a character as a role model. Throughout the book, Olive speaks of her elusive Grandpa Goad. While he’s absent for a large part of the novel, photographing rare birds in the mountains for weeks at a time, she loves him for his adventurous spirit, and frequently compares herself to him. He is the sort of person who doesn’t let anything get in his way, and she wishes that she could be just like him and live out her dreams. Imagine the reader's surprise, on the eve of the play, after Olive has broken her femur and lost all chance of performing on stage, we read the following passage: “Grandpa Goad!" I sat up and rubbed the crusty sleep of my eyes. At first, all I could see was his silhouette in the door. His small silhouette. AFFIRMATIVE REPRESENTATION 18 Grandpa Goad is four feet six inches tall. He has a large rib cage, like me. His arms are long, and his shin bones are bowed like mine. And if you know to look, and you lean in close sometimes the whites of his eyes look barely blue. Grandpa Goad has osteogenesis imperfecta, too, just the same as I do (pp. 219-20) All the while Olive has been praising her Grandfather and wishing she could be just like him, he’s had OI. In a touching, late night, heart to heart, Grandpa Goad reminds Olive that she doesn’t need a magic hummingbird to make her wishes come true. While it’s not a script for a hard situation, like we might see in the Sortino (2023) example, Lloyd (2022) offers something even rarer in children’s literature: a mature, wise, disabled, role model. With the reveal of Grandpa Goad’s OI, Lloyd (2022) forces the reader, as well as Olive, to rethink what is holding her back from achieving her goals. Grandpa Goad welcomes Olive into the disabled community and reminds her that her OI is not a tragedy. This passage challenges a dominant ideology with which the reader might not even realize they approached the story. The challenge might make a reader a little uncomfortable, facing their own biases; they might have assumed that a person with OI would be unable to pursue a career on the stage or in wildlife photography. But that is the kind of reader’s experience that is likely to be memorable and internalized. The scene challenges the ‘super-crip’ (Metheny, 2024) trope, by refusing to acknowledge the tragedy of her disability. The third part of affirmative representation is to acknowledge that our world is not built to accommodate those with disabilities. The Kirkus Review (2022) describes the unique balance that Lloyd (2022) strikes by saying, “[Olive’s] grappling with fears and bold dreams offers a rare depiction of physical disability that is allowed to be both complicated and empowering.” AFFIRMATIVE REPRESENTATION 19 The biggest, boldest dream that Olive expresses in the novel is her desire to be on the stage: Acting is one of my big career goals, along with taking care of baby otters. I'm not sure that's even a real career, but I think I’ll be great at theater. And also, theater happens on a stage. People could see that I'm capable of all sorts of awesome things. And I might even make a friend or two (p. 104). Unfortunately, this dream is paired with her fear that her OI will not allow her to realize this dream. Macklemore Middle School is putting on a school play based on the poetry of Emily Dickinson, one of Olive’s personal heroes. One of the first things she does at her new school is to join the drama club and audition for the school play. The school is more than willing to let her take part. That is, they will let her be a tree, on the floor, since there is no ramp to get her and her wheelchair on the stage. “Four rickety steps were still the only way to access any part of the stage area (p. 136).” Olive is frustrated, angry even, and Lloyd (2022) doesn’t shy away from those big feelings. In fact, her disappointment over what she can’t do at school and the school’s attempts to ‘accommodate’ her (letting her be a tree, giving her a teacher to push her from class to class) fuel her desire to wish her disability away, by finding the magic hummingbird. I would also like to mention that Lloyd (2022) doesn’t dance around the accommodations that Olive does use either. In the first chapter of the novel, Olive introduces her wheelchairs to us: In case you're curious, I have two wheelchairs. They both have names: Dolly and Reba. Dolly's my sparkly, custom-fitted, go-to set of wheels. I hot-glued my name in AFFIRMATIVE REPRESENTATION 20 rhinestones on the back. I maneuver Dolly's wheels myself, and gosh, I love the way she glides. Reba is motorized, with a maroon seat and shiny red rims that sparkle in the sun. Contrary to popular belief, I don't hate my wheelchairs. They help me do whatever I want. I consider them fine chariots. So don't feel sorry for me on account of the wheels (p. 6). Furthermore, the wheelchair is a constant presence in Olive’s life, so it is a constant presence in the text. Olive doesn’t “walk” anywhere, she “rolls.” While there may be an argument that replacing a verb that is largely invisible in the reader's mind with a brand new one may become exhausting, it increases the immersion of the reader into Olive’s experience, by refusing to let them forget that Olive’s OI exists. Even though the scope of this project allowed for only two close-analyses, it’s enough to see a pattern. A close examination and analysis of these two books that afford immersive disabled characters and reading experiences demonstrate replicable techniques that disabled and non-disabled authors can emulate to ensure high quality and authentic disabled representation in their writing. In the findings section, these techniques are distilled into guideposts that provide authors with confidence that they can write disabled characters well. More than that, the identified techniques are concrete and replicable within other contexts. That is, authors considering adding disabled characters, or telling stories from the disabled experience, can start with these guideposts and be confident that they are on the right path to great affirmative representation. Findings In 1994, Annette Heim put forth her five guidelines for evaluating characters with visual impairments. In this section, I will extend her work backwards, by using her guidelines as a AFFIRMATIVE REPRESENTATION 21 model for the guideposts distilled from the close analysis of the text set of immersive novels. My guideposts are meant to be much more broad in respect to the disabilities that they apply to. They are also meant for creators, authors, who are writing the stories, rather than for readers who are evaluating the finished product. Guidepost #1: Allow the disabled character to introduce themselves and their disability. In the spirit of Metheny’s (2024) first part of the affirmative model of disability, founded on Swain and French’s (2000) definition, all the examples acknowledged the social construction of disability, specifically by challenging that construction. Each character is allowed to describe their own experience rather than relying on the surrounding characters and circumstances to relay this information to the reader. This may look different depending on the specifics of a story, but a common theme in affirming narratives is challenging the norm surrounding how disabled characters are perceived, specifically in the minds of the other characters of the story. This is accomplished by giving the disabled character space to tell the reader how they see themselves. In all three cases we’ve seen so far, the character specifically told the reader how they feel about their disability. Lilah isn’t sure how she feels about it and asks that assumptions be held while she figures it out (Sortino, 2023). Olive thinks it’s a normal part of her life and wishes that others were as comfortable with it as she is (Lloyd, 2022). Zofia finds it difficult to process conversations and asks for advice (Chokshi, 2018). All of these responses to disability are important and valid, but knowing an individual's relationship with their disability fosters respect for their decisions and ambitions and avoids potential assumptions that might be disrespectful. Guidepost #2: Providing positive examples and role models for the disabled characters. Metheny (2024) describes the second part of the affirmative disability model as about creating a community and embracing the right to be a part of that community. In Give Me A Sign, AFFIRMATIVE REPRESENTATION 22 Sortino (2023) acknowledges that not all adults are good examples, or handle a young person's disability sensitively. We see that Lilah and Max’s parents are unwilling to accommodate their children’s hearing, instead requiring them to do what is necessary to pass for hearing, or function as hearing. But we also see Lilah and her friends modeling hard conversations with Mackenzie as they navigate the way the outside world perceives them and their camp. Sortino gives the reader a chance to see how situations can be handled with grace. Lloyd (2022) gave her character a great role model in the form of Grandpa Goad, a character who manages to achieve his dreams despite also having OI, just like Olive. In a world where children and teens often interact with adults and disabled people in fiction before they find themselves in similar situations in their own lives, it is important to give them these positive role models and present positive interactions around sensitive issues to give them examples of what to do and what not to do in a situation that might arise. Swain and French (2000) also remind us that affirmative disability is rooted in disability pride, not only in a non-tragic view of disability, but in the community that disability gives the right to be part of. A primary benefit of that community is positive examples and role models, the realization that there are others who have navigated this experience. Guidepost #3: Acknowledgement of accommodations. As a reflection of the third part of affirmative representation, defined by Metheny (2024) as allowing the characters to express how different their experience is from their non-disabled counterparts. There are two parts to this in practicum: First, the inclusion of necessary accommodations that a character would require to function: prosthetics, wheelchairs, assistive devices and the like. Like Lloyd (2022) who AFFIRMATIVE REPRESENTATION 23 embraced the wheelchair, almost as its own character, thereby allowing Olive to accept the chair, it’s important to acknowledge these things and how they impact the lives of those who use them. The second part is the acknowledgment of the missing accommodations. It is common for disabled readers to run into situations where they are unable to complete a task or participate in an activity because of their disability and their surroundings are not built to accommodate them. It’s normal for the character to be frustrated or disappointed at this outcome. Just as Lilah’s brother Max is forced to make a decision between hearing aids and a cochlear implant, because his parents refuse to use ASL, many disabled people must learn to function around the limitations of the world around them. Guidepost #4: Vocabulary Substitution While the first three guideposts outlined in this section are content based, with the affirmative model of French & Swain (2000) as our foundation, our last two are form-based. Guidepost four is something that Sortino (2023) and Lloyd (2022) have in common and it is based on their vocabulary. Both authors were very careful to use verbs in a way that reflected the actual experience of their disabled characters. A large portion of the immersion score is made up of the simple substitution of simple verbs. Olive travels in a wheelchair, so she doesn’t “walk” she “rolls,” she doesn’t “run” she “hastens.” It’s simple in practice, but significant in two ways. Walking is not an activity most of us think much about, but for Olive, it’s a labor-intensive, even dangerous activity. The substitution of the verbs is closer to Olive’s experience, immerses the reader further into her story. AFFIRMATIVE REPRESENTATION 24 It also transforms a usually near-invisible process, one character moving from one place to another, into a hardworking sentence that catches the reader's attention and refuses to let them slip out of Olive’s point of view. Sortino (2023) does the same with her characters and the way they use sign language to communicate. The prevailing wisdom on dialogue tags, the words that signal that character is speaking, such as said, shouted, whispered or gasped, is that less is more. The word ‘said’ is largely invisible to the reader because of its frequency, and it’s generally understood that messing with it or adding to it forces the reader to focus on how a character said something rather than what was actually said. Janice Hardy, author and founder of Fiction University says, “Dialogue tags work best when they're invisible… (2014)” and because Give Me A Sign is in the present tense the same goes for the word ‘says.’ But Sortino (2023) makes the choice to add the word ‘signs’ to her dialogue tags. Almost every time a character says something out loud they are also signing; and she writes ‘says and signs.’ Guidepost #5: Breaking the Linear Form Our fifth guidepost comes from something that Lloyd (2022) and Sortino (2023) did differently from each other. As was mentioned in our analyses, Sortino (2023) sticks to the linear form a reader expects when they pick up a novel. But Lloyd (2022) doesn’t, she includes free verse poetry in her novel, particularly when Olive is struggling with big emotions within her own mind. Olive thinks in poetry. Kirkus Reviews agrees that “the energetic first-person narration, interspersed with AFFIRMATIVE REPRESENTATION 25 Olive’s thoughts in free verse, is full of bold personality (2022).” This is fascinating when considered alongside Olive’s disability. When her bones are put under stress, they shatter into smaller pieces. When Olive’s thoughts are under stress, they shatter into smaller lines. Lloyd (2022) uses the form of her novel to ‘afford’ her the opportunity to mimic Olive’s bodily experience. While Give Me A Sign doesn’t take advantage of breaking the form, we find several examples if we look elsewhere in the text set. Thomas Leeds (2023), who wrote Jayben and the Golden Torch (15% IS), mimics Jayben’s seizures by placing an illustration of a starburst in place of the missing time that the character experiences. (see Image 1.) The text stops mid sentence, the illustration conveys the time passing, and then the text picks up again when Jayben comes back into himself. The illustration affords Leeds the opportunity to move time forward without leaving Jayben’s point of view. Kane (2020), who we mentioned in Guidepost #3, and her novel Charlie & Frog don’t deviate from the linear form of the novel’s sentence, but every chapter title is written in ASL, that is, in images of the appropriate signs. AFFIRMATIVE REPRESENTATION 26 Not only does she include the signs, they get progressively more advanced as the novel continues. She starts with the fingerspelling images with letters to label them and ends with signs for words and phrases. It has no measurable effect on the content of the novel, but the form of the chapter titles allows Kane (2020) to educate her hearing readers on the language being used between the protagonists and affords her the opportunity to create an opening for her readers into the deaf community that they are reading about. Conclusion I set out to find novels that were creating immersive experiences into the disabled experience for readers of children’s and young adult literature. I wanted to study novels that integrated the character's disability into their identity and carried that experience all the way through the novel. I assigned each novel a quantitative value based on qualitative criteria using network theory and by counting the direct mentions of the protagonist's disability. I anticipated the commitment to the experience to be rooted in the affirmative model of disability as defined by Swain & French (2000) and developed by Metheny (2024). Once these novels were identified, I intended to discover what contributed to the representation of the disabled experience in an immersive, accurate, and sensitive portrayal. The purpose of this article was to find techniques, based on successful representations, modeled after Heim’s (1994) work in guidelines for evaluating characters, that will encourage the creation of more affirmative disabled characters.. Identifying five guideposts will give authors a resource to bolster their confidence that their work is well on the way to affirmative representation of diverse experiences. These guideposts were written with the assumption that the disabled experience is central to the story, but I do believe they can be altered to work for secondary disabled characters whose point of AFFIRMATIVE REPRESENTATION 27 view isn’t visited. These guideposts are practical, identifiable, and replicable, as shown by their pattern of existence across the text set. What I did not intend to find were the two bonus guideposts based on vocabulary and form that also give authors direction when revising,editing, and making small-scale decisions. I discovered that simple word substitutions go a long way toward immersion and that breaking the typical form of the novel affords the author different opportunities to better convey the disabled experience. With both the guideposts in this article and Heim’s (1994) guidelines for evaluating characters, affirmative representation is that much more accessible for both disabled and non-disabled storytellers. As a writer, I have become convinced that in order to portray an ‘atypical’ experience, I must commit to writing in an ‘atypical’ form. The content remains largely the same, with themes of adolescence and coming of age mirroring the themes of disabled literature, but it’s the form and craft, our guideposts, that make the difference in affirmative representation. As a result of this research, I, as a disabled writer, invite both disabled authors and non-disabled authors alike to include disabled characters in their work. The hope is that there will be more disabled experiences on the shelves, but also more research into how our fiction, from the sentence level up, can inform our reality. AFFIRMATIVE REPRESENTATION References Carroll, P. S., & Rosenblum, L. P. (2000). Through Their Eyes: Are Characters with Visual Impairment Portrayed Realistically in Young Adult Literature? Journal of Adolescent & Adult Literacy, 43(7), 620–630. Chokshi, R. (2018). The Gilded Wolves. Hodder. Curwood, J. S. (2012). Redefining normal: A critical analysis of (dis)ability in young adult literature. Children’s Literature in Education, 44(1), 15–28. https://doi.org/10.1007/s10583-012-9177-0 Duyvis, C. [@corinneduyvis]. (2015, September 5). Glad important discussions are had. Would love to be able to walk away with book recommendations. How about a hashtag? [Post]. Twitter. Hardy, J. (2014, November 19). Tag! you’re it: Talking about dialogue tags. Fiction University. http://blog.janicehardy.com/2009/06/tag-youre-it.html Heim, A. B. (1994). Beyond the Stereotypes: Characters with Mental Disabilities in Children’s Books. School Library Journal, 40(9), 139–142. Honor Roll. DisabilityinKidLit.com. (2013). https://disabilityinkidlit.com/honor-roll/ Kane, K. (2020). Charlie and Frog. Little, Brown and Company. Leeds, T. (2023). Jayben and the Golden Torch. Hachette UK. Lloyd, N. (2022, August 2). Hummingbird. Kirkus Reviews. https://www.kirkusreviews.com/book-reviews/natalie-lloyd/hummingbird-lloyd/ Lloyd, N. (2022). Hummingbird. Scholastic Press. Metheny, C. (2024). "Being sick is not a bad thing”: A Critical Content Analysis of Disability in Young Adult Literature. The ALAN Review, 52(1), 11–26. 28 AFFIRMATIVE REPRESENTATION Moretti, F. (2013). Network Theory, Plot Analysis. In Distant Reading, (pp. 211–240), Verso. Poetry Foundation. (n.d.). Line. Poetry Foundation. https://www.poetryfoundation.org/education/glossary/line Puckett, L. (2023). The Odds. Scholastic Press. Shannon. (2023, July 13). A Q&A with Anna Sortino, author of ‘Give Me a Sign. Penguin Teen. https://www.penguinteen.com/a-qa-with-anna-sortino-author-of-give-me-a-sign/ Short, K. G. (2017). Critical content analysis as a research methodology. In Critical content analysis of children’s and young adult literature (pp. 1–15). Routledge. Sortino, A. (2023, July 11). ‘Give Me A Sign’. Kirkus Reviews. https://www.kirkusreviews.com/book-reviews/anna-sortino/give-me-a-sign-sortin o/ Sortino, A. (2023). Give me a sign. G.P. Putnam’s Sons. Swain, J., & French, S. (2000). Towards an affirmation model of disability. Disability & Society, 15(4), 569–582. https://doi.org/10.1080/09687590050058189 29 AFFIRMATIVE REPRESENTATION Works Consulted Bell, C., & Lasky, D. (2014). El Deafo. Amulet Books. Bradford, C. (2017). The Critical Reading Of Children’s Texts: Theories, Methodologies, and Critiques. In Critical Content Analysis Of Children’s And Young Adult Literature, (pp. 16–27),., Routledge. Chokshi, R. (2020). The Silvered Serpents. Hodder. Clarkin, A. (2023). What Walks These Halls. The O’Brien Press. Hadley, H. L., & Toliver, S. R. (2023). The monstrous hospitality of canonical text selections: The need for a hospitable literacy framework. Journal of Literacy Research, 55(4), 428–449. https://doi.org/10.1177/1086296x231215325 Hale, S., Pham, L., & Poole, J. (2019). Real Friends. First Second. Hastings, N. (2024). The Frost Fair. HarperCollins. Leeds, T. (2024). Jayben and The Star Glass. Hachette UK. Savage, J. S. (2013). Land Keep. Shadow Mountain. Savage, J. S. (2014). Air Keep. Shadow Mountain. Savage, J. S. (2024). Fire keep. Shadow Mountain. Savage, J. S., Hodges, K., & Wright, M. (2008). Water keep. Shadow Mountain. Schmid, L., & Vázquez, C. (2024). Hart & Souls. 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