Young Adult Book Reviews

ABLE REPRESENTATION OF DISABILITY IN BOOKS FOR TEENS

Since the voices of young people were a driving force in the social movements and shifts of the 1960’s, it’s not surprising that the late 60s and the 70s saw, for the first time, authentic, honest, and challenging representation of young adult experiences in literature. Real-world adolescent experiences were on display, as was the power of teens to transform and effect change. Taboo-busting authors like Judy Blume, Sue Ellen Bridgers, Alice Childress, Susan Cooper, Robert Cormier, Terry Davis, Paula Fox, Rosa Guy, Mildred Taylor, Katherine Paterson, Robert Newton Peck, Robert O’Brien (Batchelder et al., 1980) tamped a path for writers who, writing for teens, determinedly offer readers authentic glimpses of life and bold, interrogating takes on the world around us. Yet, despite the growing commitment to honest takes, inclusion, relevance, honesty, and accuracy, representation, both in numbers and authentic depictions of ways of being in this world, were and continue to be problematic in publishing. (The Cooperative Council on Books for Children offers extensive resources on trends in cultural representation in publishing. To explore, start by scanning the QR code, but be sure to follow the various links to interpretation and commentary.)

When a community is underrepresented on the shelves, a single book may be tasked with standing for a complex cultural/social experience. Thus, even a well-crafted representation is, as a stand-alone perspective, skewed. A single book, or even a few, is unable to carry the load of accurate and authentic representation of complex experiences. Furthermore, representations of experiences of marginalized communities must stand in both historical and contemporary spaces, as readers often bring limited, often stereotypical perceptions to the interpretation. On the other hand, encountering experiences and developing knowledge from books has a strong potential for challenging stereotypes and dispelling myths.

Experience with disability is a critical example of such marginalized and frequently stereotyped representation. CCBC data from 2019 indicate that only 3.4% of books published that year featured at least one primary character with a disability (https://ccbc.education.wisc.edu/the-numbers-are-in-2019-ccbc-diversity-statistics/). It is important to note that those statistics do not include analysis of accurate and authentic representation. U.S. Census data for 2021 indicate that 4.3% of individuals under the age of 18 have a disability, a number that doesn't take into account the vast number of children who have friends and family members with disabilities. In short, we must attend to the number and quality of disability representation in literature for young readers. The recently published books we introduce here are a great place to start for enriching your collection with disability representation. For further exploration, we recommend you follow the QR code.

In selecting books, we were looking for authentic, accurate representation, fully realized characters, and realistic depiction of disability (for instance, avoiding stereotypes such as “they can just automatically heal,” or working harder or believing more will help them “get over” a disability.) In these books, and others you should consider

for your shelves, the disability experience is part of a full life, not defining aspects of the individual. The books below, fit the characteristics and, importantly, are inviting, engaging texts.

Get a Grip Vivy Cohen by Sarah Kapit, 2020; Dial Books.

Vivian Jane Cohen is a knuckleballer. She’s worked hard to master the “pitch that defies the laws of physics” (p. 3) and dreams of playing in the major leagues someday. But she's been told that “girls don’t play baseball. Especially not autistic ones.” Vivy has an assignment for her social skills group to write an actual letter, not an email, to someone. She decides to write to Vincent James Capello, a knuckleball pitcher she met during a social event for the Autism Foundation. There, Capello showed her the knuckleball grip and encouraged her to try it at home. She did, practicing until she developed a wicked knuckleball.

Capello is starting a new season after an embarrassing mistake that cost his team the World Series. Despite being a two-time All-Star and a Cy Young winner, he has to prove himself all over again. Certainly, he doesn’t have time to answer a letter from an eleven-year-old girl. Writing letters feels good to Vivy, though. She can share her thoughts and struggles more easily on the page, so she keeps going. Vivy writes about her excitement at being invited to join a baseball team after the coach sees her throwing knuckleballs in the park, about her frustration at her mother’s hesitation to let her, and about her therapist’s weighing in on the issue. She writes about finally getting a yes—with stipulations like going to social skills group every week, eating her vegetables, and having no meltdowns that involve screaming. In each letter, Vivi offers Capello encouragement, too. She never expects he will write back—but then he does. In the correspondence that ensues (appropriately monitored by Vivy’s dad), Vivy pours out her hopes and frustrations. Capello tries to offer guidance but, struggling with his own frustrations, is unsure how to help.

Kapit tells the story entirely in letters, allowing Vivy’s strong voice to illuminate how autism might influence the lives of individuals and families. Relationships are warm but not contrived. Tensions are real but not played for dramatic effect. Characters are complex, not stand-ins for roles or perspectives. And Vivy, determined, vulnerable, courageous, smart, and funny, comes through clearly as the kind of person we’d all like on our team and someone we would root for.

Author Sarah Kapit is a member of the autistic community and is committed to bringing authentic and diverse representation of autistic individuals to books for young readers. Kapit notes that her characters “do have some body movements and a few other traits that may be considered more stereotypical, but…if you look at their characters in full, they are so much more than the tired autism stereotypes." In fact, she worried "that some readers might think they’re not autistic enough because stereotypes have distorted people’s views of what autistic people are like. ” (Lavoie, 2021). Kapit’s middle-grade new release, The Mysteries of the Finkle Family, is about two sisters who are both autistic and their relationship with their big Jewish family.

Cursed by Karol Ruth Silverstein, 2019; Charlesbridge Teen.

Everything has changed for Ricky, and certainly not for the better. As if her parents’ contentious divorce was not enough, Ricky has developed juvenile rheumatoid arthritis (JRA). The sudden onset of overwhelming and chronic pain necessitates a move from her mother’s two-story house to her father’s one-level “batch pad” where she sleeps on the “Sofa Bed from Hell.” Adding insult to injury, she was a freshman at her old high school, but her new school houses 9th grade in the middle school, where her classes are too far apart, she has no steady access to an elevator key, and is subjected to constant ridicule from other students. Exhausted, embarrassed, overwhelmed, and angry, Ricky gives up on attending school, covering her tracks by getting dressed in the morning, then climbing into her father’s comfortable bed, desperate for sleep. Writing the wrong phone number on the school paperwork helped her absences go unreported, so by the time the truth comes out, Ricky has missed six weeks of school and is unlikely to pass the year. Surprisingly to Ricky, her father advocates for her, pushing for accommodations and for Ricky to be given a chance to make up the work and graduate.

Ricky finds a good friend in Oliver, the other kid who waits in the nurse’s office each morning instead of standing outside of school. Oliver, a cancer survivor, helps Ricky navigate the medical world and learn to advocate for her own needs. While other teachers accommodate Ricky's make-up work with kindness, her Public Speaking teacher, Mr. Jenkins, sees her potential and pushes her to reach it, becoming a fierce advocate in the process. Their support and the support of her family are instrumental, but it’s Ricky’s strength and determination that help her move forward to manage her new reality.

Silverstein, herself diagnosed with JRA as a youth, paints a credible picture of what it is to live with chronic pain and the reality of a disease that can be managed but not cured. Information about arthritis and advice on how to navigate the medical system are woven heavily into the narrative, but good storytelling isn’t the least bit lost in the process.

The Aven Green books by Dusti Bowling Insignificant Events in the Life of a Cactus, 2017 Momentous Events in the Life of a Cactus, 2019 Aven Green: Sleuthing Machine, 2021. Illustrated by Gina Perry Aven Green: Baking Machine, 2021. Illustrated by Gina Perry.

Aven Green has been known to make up outlandish stories to explain her “lack of armage” (2017, p. 6) to inquiring peers, but the truth is she was born without arms. Since her adoption at two, Aven’s parents have taught her to be “an extreme problem solver, like a problem-solving ninja” (2017, p. 30). Though she is disabled, Aven is certainly not incapable, able to use her feet and flexibility to do just about anything arms and hands can do except, she bemoans, “air quotes” (2019, p. 74). Aven is the kind of character a reader quickly forms a relationship with and begins to root for. Clearly emerging across Bowling’s Aven books is the truth that individuals with physical differences must constantly navigate other people’s

discomfort. Bowling has published four books featuring Aven, each addressing a different phase of her life.

Insignificant Events in the Life of a Cactus (2017) finds Aven suddenly transplanted from the Kansas town she grew up in, where she was surrounded by lifelong friends and played on the soccer team, to Arizona where her family will live on and manage a rundown Western theme park. With classic Aven humor, she notes that it’s not at all like living at Disney World but rather like “Disney Shanty Town” (2017, p. 21). Starting a new middle school is never easy but being the new kid who also doesn’t have arms makes it especially hard. Over the course of the book, Aven finds good friends in Conner and Zion (who both understand what it is to feel different), starts a blog, plans a festival to benefit their theme park, finds the guts to perform in it, and solves a park mystery that sheds light on Aven’s own origins.

Momentous Events in the Life of a Cactus (2019) finds Aven taking on the “sucktastic beast” (p. 146) that is high school. Bowling doesn’t shy away from the challenges of disability or of being different in a high-school world that demands conformity. Aven’s foray into high school brings her face-to-face with an “unbearable level of meanness” (p. 96) that erodes her confidence. Her best friend Conner has moved away and made friends with another girl who, like him, has Tourette’s, so Aven is sure she’s lost him. Zion’s handsome, popular older brother seems to like Aven but, afraid of rejection and ridicule, she pushes him away. Her plans--to perform a jump on her horse and to play guitar before an audience—crumble along with her self-esteem. Aven's elderly friend Henry is declining, a fact that makes Aven particularly forlorn because he was raised in an orphanage and has no family. Though, in this second book, Aven loses sight of her strengths, the people who love her shine her worth back to her until she can see herself again.

Aven Green: Sleuthing Machine and Aven Green: Baking Machine, both published in 2021, introduce us to a younger Aven and are written for a younger audience. As with the two books for teen readers, Aven narrates with slightly cheeky humor and loads of confidence. Her disability is addressed matter-of-factly, including explanations of how she gets things done. Her abilities, from her “superpowered brain” (Sleuthing, 2021, p. 13) that help her solve mysteries to her flair for making friends, are on full display.

Adoption is an important part of Aven’s story and is clearly and directly addressed in all four books. In the books for younger readers, the story of her parents finding and choosing her is told with warmth and celebration. In the YA selections, her adoption features more fully into the plotline as Aven investigates and learns more about her birth origins. Whereas adoption in YA literature is often misrepresented and exploited as a plot device (Parsons et al, 2017), Bowling approaches it openly and authentically as Aven’s growing interest in her birth origins is welcomed and supported by her parents.

Bowling does not have a limb difference or direct experience with limb differences. She was inspired by YouTube videos recorded by women without arms to demonstrate how they did things in their daily lives. Those women served as sensitivity readers to verify authenticity (Yingling, 2017). Though Bowling has family members with conditions similar to Tourette’s, she conducted extensive research there as well to ensure Conner’s experiences were realistically represented (Publisher’s Weekly, 2017).

The Silence Between Us by Alison Gervais

The tagline on the cover of the Silence Between Us reads “I see you, Now hear me.” It is the perfect summary of this coming-of-age novel. It’s senior year. Maya moves with her mom and little brother Connor (who has Cystic Fibrosis or CF) from New Jersey to Colorado. Maya, who lost her hearing at age thirteen, must attend a hearing school for the first time in five years. Maya prefers to communicate in American Sign Language (ASL), but she has a bold and snarky attitude and does use her voice when she needs to. On her first day, Maya meets Nina, the student assigned to show her around—and Bo, the kind of goodlooking, but slightly annoying, student body president—who keeps showing up in all her classes. Maya’s interpreter Kathleen is the only one who has any clue about Deaf culture in the beginning, but Bo and Nina have friend potential. As the novel unfolds, we see Maya’s struggles as the only Deaf student in a hearing school, her hopes for college, her love of art, the weight of helping care for a sibling with a chronic illness, and the beginnings of a romantic relationship with Bo.

Author Alison Gervais (who is Hard of Hearing or HOH) uses this novel to both explain and explore Deaf culture. Anytime someone signs in the book, what they say is in ALL CAPS. Also, what they sign is written how it would be signed in ASL, not in English. For example, in English we might say “I’m Nervous” in ASL, it would just be the sign for NERVOUS. Later in the book, when Maya goes to meet other teens with hearing loss, she discovers that many of them have Cochlear implants (still controversial in the Deaf community)--and the concept of deaf and Deaf is explained through the characters’ dialogue. Gervias discusses this further in her author’s note at the end of the novel. The Silence Between Us puts emphasis on the importance of communication and language in the Deaf community and shows how hearing culture can exclude Deaf people. Gervais integrates all of this into Maya’s story and illustrates how being Deaf contributes to her experiences and interactions with the world around her.

This novel is clean YA with no sexual content beyond kissing and no foul language. Though Maya and her classmates are seniors, this novel would probably appeal to younger teens as well as older ones. (Grades 7-12)

A Sporting Chance: How Ludwig Guttman Created the Paralympic Games by Lori Alexander (author) and Allen Drummond (illustrator). Clarion Books, 2020.

As noted in the title, A Sporting Chance: How Ludwig Guttman Created the Paralympic Games is a history of the origins of the Paralympic Games—yet, it is so much more. Alexander begins the story when Guttman opts to finish high school early so he can volunteer in the German National Emergency Program which was founded to address domestic work shortages due to WWI. Serving in a hospital, Guttman encountered a young miner with a spinal cord injury that rendered him paraplegic. A doctor explained that such cases were hopeless; the patient would be dead in six weeks. Guttman watched the suffering and never forgot.

An infection he caught working in the hospital disqualified Guttman for military service, so he entered medical school where his volunteer experiences served him well. Along with his studies, Guttman pursued his lifelong passion for sports, joining a fencing club for Jewish students and hiking the Black Forest mountains, a place he had loved since scouting trips as a child. When he and his soon-to-be wife learned Jewish children were no longer allowed to join scouts, they established a scouting group for them.

Guttman completed a residency in neurosurgery with a prestigious mentor who eventually hired him as a colleague. When Jewish doctors we banned from public hospitals, he moved to an all-Jewish hospital where he became the director. Though he’d hoped to wait out the political situation, it soon became evident this was not an option. During Kristallnacht, Guttman told his staff to admit any male, no questions asked, then he managed to convince investigating Gestapo that the sixty men he sheltered were legitimate patients. But Guttman was now under the close watch of the government who made increasing demands for his service. With aid from a British Society of Protection of Learning and Science, the Guttmans, now a family of four, immigrated to England, leaving their home, belongings, and money behind.

Unable to secure a job treating patients, Guttman moved into research, doing innovative work on identifying damaged and working parts of the nervous system. With WWII producing scores of paralyzed patients, Guttman was asked to head a new specialized unit at the Stoke Mandeville Hospital near London. Guttman agreed, as long as he was given free rein to try out his innovative approaches—community and care rather than isolation, abandonment of full body casts, constant turning to alleviate bedsores, catherization to ward off kidney infections, and nonsurgical responses whenever possible. Within a year, Guttman’s approach had reduced the expected 80% death rate for spinal injury patients to an 80% survival rate, but he wasn’t finished innovating. Guttman got patients out of bed and moving, and engaged them with hobbies and chances to learn new skills. Patients found hope and purpose, but the broader community still viewed their situations as depressing and hopeless. When Guttman noticed some patients in wheelchairs improvising with a stick, ball, and goal, he got the idea of engaging them in sports. Though the “clashing sticks and bashing wheelchairs” in wheelchair polo proved a bit much, basketball was a hit. It was archery, though, that shot the idea of paraplegics as capable athletes into the broader consciousness. Archery was great for developing upper body strength and control and the nature of the sport allowed players to compete against non-disabled opponents.

By participating in tournaments, Ludwig’s patients were able to show the broader community what they could do, changing attitudes about disability.

In July, 1948, the same day the Olympic Games launched in nearby London, Guttman hosted the first annual Stoke Mandeville Games, an archery competition between patients from two hospitals. When a member of the International Olympic committee watched the games in 1956, he recommended Guttman and the games for a prestigious award acknowledging achievement honoring the Olympic ideal. That award launched the games into the international arena. By 1959, participation grew from 16 athletes representing two hospitals competing in one sport to 350 athletes, representing 20 countries competing in 11 sports. Today’s games, viewed by millions, involve more than 4,000 athletes from all over the world. Guttman continued working feverishly to share his methods, effectively transforming the perception and treatment of spinal cord injuries worldwide. Alexander concludes with a focus on contemporary athletes and their achievements on and off the playing field.

In only 116 pages, including back matter with full timeline, index, and bibliography, Alexander not only details Guttman's vast contributions but also provides a wealth of knowledge on how medicine works and medical innovation happens. She explains the whats and whys of a dark and complex period of history accurately and movingly while highlighting and celebrating the incredible power of the human spirit. Photographs, diagrams, and informative sidebars extend the text and clarify concepts and contexts, working alongside Allen Drummond’s lightfilled, cartoon-style illustrations. Guttman’s commitment to the value and potential in every person and every situation, coupled with his problem-solving and tenacious agency, is an important model for teens today. Alexander’s tone and delivery is spot-on for these readers.

Roll With It by Jamie Sumner, 2019; Atheneum Books for Young Readers

Ellie is a baker. Not just an occasional creator of treats but a baker who aspires to be among the very best. She pores over cookbooks and baking blogs and writes letters to the world’s best bakers, asking questions and seeking advice. Scones, galettes, challah, linzer cookies with homemade orange marmalade— Ellie is fearless in the kitchen. But at school, she’s the kid in the wheelchair, the one who needs an aide. Diagnosed with cerebral palsy at birth, she’s used to it, but she doesn’t like it. It seems that people expect the girl in the wheelchair to be all sunshine and cuddles, but Ellie has opinions. Having worked so hard for so long to gain strength and do things for herself, and especially now that she has outgrown seizures, Ellie is pushing for a little more independence. But Ellie’s mom, a single parent, who has lived so long in advocacy mode fighting to get Ellie everything she needs to thrive, is having trouble giving way a bit.

When a phone call brings troubling news that Ellie’s beloved grandfather, struggling with Alzheimer’s, has driven a car into a storefront, Mom pulls Ellie out of school mid-year to head to Oklahoma to help out. In Eufala, they settle in to Mema and Grandpa’s trailer home. Mema, “a force of nature,” (p. 124) is reluctant to accept their help, but when Grandpa accidently sets a fire during the Christmas Eve service, it’s clear she needs it. For Ellie, Mema’s yellow kitchen is warm, familiar, and welcoming, but the rural school she attends is like nothing Ellie has ever

experienced. The bus can’t accommodate her and not much thought has been put into making space in the classroom, literally and figuratively. Ellie is used to being on the outside because of her CP, but now she’s on the outside because she lives in a trailer park, too. Yet, for the first time ever, Ellie has true friends beside her: Coralee, the determinedly sparkling, big-haired girl from the trailer next door, who has her eyes set on being a star, and Bert, whose father runs the local grocery.

Ellie narrates the story, so we are along for the ride as she navigates the twists and turns of her changing life. Sumner’s multifaceted characters ring true. Challenge, including disability (Ellie’s CP, Grandpa’s Alzheimer’s, and Bert’s autism) and circumstance (such as absent parents and parenting partners), is addressed realistically and with respect for human resilience. Adults and youth alike find ways to navigate difficult pathways, fueled by love and determination with a steady dose of humor and grace. Sumner, who is the parent of a child with cerebral palsy, paints a vivid picture of what it is like for Ellie to live with CP. It is a significant part of Ellie’s life, but it doesn’t define her. Instead, whatever comes her way, Ellie is learning that she can “roll with it.”

Two recently published anthologies, one nonfiction and the other fiction, address the dearth of representation issues head on by including multiple representations in one book.

I Am Not a Label: 34 Disabled Artists, Thinkers, Athletes, and Activists by Cerrie Burnell (author) and Lauren Baldo (illustrator), 2020; Quarto Publishing.

I Am Not a Label is a multicultural collected biography featuring disabled individuals, historical and contemporary. Burnell directly addresses her choice to use identity-first language (e.g. disabled individual rather than an individual with a disability) to emphasize that “people are disabled by society and do not need to be fixed” (p. 3). The volume includes a wide range of artists—musical, theatrical, visual, and literary—as well as athletes, scientists, scholars, innovators, and activists. A broad range of disability is represented including physical, with the focus throughout on ability and achievement. However, Burnell also clearly addresses the struggles individuals encountered as a result of social stereotypes or systemic barriers. The brief biographies are clear and accessible, long enough to inform and well-written enough to inspire further inquiry. A glossary, index, and list of additional resources to explore round out the volume.

Unbroken: 13 Stories Starring Disabled Teens, edited by Marieke Nijkamp, 2018. Farrer, Strauss, and Giroux.

Unbroken: 13 Stories Starring Disabled Teens is a fiction anthology including short stories in multiple genres—fantasy (including a science fiction selection) and contemporary and historical realistic—and forms. Each story is written from the point of view of a disabled main character and by a disabled author who experiences that disability. The stories take place around the globe and in historical, contemporary, and futuristic settings. Representation is richly inclusive across race, culture, gender, and sexual orientation, and categories of

disabilities. From romance to mystery to magic to angst, there is something to appeal to everyone here. Additionally, the quality of the writing and range of styles make this book a rich source of mentor texts for teaching writers.

References

Batchelder, L., Kelly, P., Kenney, D., & Small, R. (1980). Young adult literature looking backward: Trying to find the classic young adult novel. Teaching English, 69(6), 86-89.

Lavoie, A. (2021, March 23). Q&A with Sarah Kapit, The Many Mysteries of the Finkel Family. We Need Diverse Books. Retrieved from https://diversebooks.org/qa-with-sarah-kapitthe-many-mysteries-of-the-finkel-family/

Parsons, S.C., Fuxa, R. Kander, F. & Hardy, D.. (2017). Representations of adoption in contemporary realistic fiction for young adults. Journal of Language and Literacy Education, 13(1), 70-92.

Publishers Weekly. (2017, May 17). Spotlight on Dusti Bowling. Retrieved from https://www.publishersweekly.com/pw/by-topic/authors/profiles/article/73580-spotlighton-dusti-bowling.html

Yinglin, K. (2017, September 20). Chatting with Dusti Bowling, author of Insignificant Events in the Life of a Cactus. School Library Journal. Retrieved from https://www.slj.com/?detailStory=234420

Suzii Parsons believes that books truly matter in the lives of young people. Suzii Parsons is the Jacques Munroe Professor of Reading and Literacy at Oklahoma State University. You can contact her at sue.parsons@okstate.edu.

Rebecca Weber is an associate professor, serving as the Education and Teaching Librarian for Oklahoma State University. Her research interests connect disability and young adult literature. Contact her at Rebecca.weber@okstate.edu.