Like their real-life counterparts, fictional characters with disabilities have historically been excluded, marginalized, or used to teach moral lessons. In 1942 , writing teacher and editor Maren Elwood advised writers to “select characters, especially for major roles, who are normal, mentally and physically, who do not suffer from incurable, painful, or crippling diseases, and who do not die in the end” (p. 158). Readers, she said, do not want “to have their feelings harrowed, their hearts torn, or to contemplate the disagreeable aspects of life” (pp. 157–158). This prohibition has not excluded minor characters with disabilities from appearing in for youth fiction, in ways that marginalize and stereotype those characters. From ancient times to the present, characters with disabilities have been used to impart moral lessons. Scholar Lois Keith ( 2001 ) identifies “three stock responses toward disabled people: they (or their ancestors) have been punished; they have been pitied; or through faith in God or self, they have been encouraged to overcome what is usually seen as a burden of sorrow” (p. 15). Many children’s (and adult) books have included characters with physical or mental disabilities as villains, their physical crippling often a symbol of their having been “touched by the devil” (p. 16). Those terminally ill or disabled characters who appear as objects of pity in classic literature serve as the polar opposites of the disabled villain. They are, as Keith describes, “too good to live” (p. 33)—uniformly “sweet, passive, and forgiving” (p. 34), accepting their fate without protest, rancor, or self-pity.
When female protagonists in classic literature acquire disabilities, Keith argues, these disabilities are always temporary and often the result of some misbehavior. Once they learn to behave in demure, ladylike ways, they are restored to health, having discovered “that there are lessons to be learnt from suffering and that out of this torment, it is possible to become a better person” (p. 86). Readers also learn that “children who cannot walk are to be pitied and cared for but they can never be accepted . In order for them to live into adulthood, they must be cured” (p. 99). Keith criticizes both the lack of realism in depicting disabilities and the assumption that those who have them cannot play leading roles in stories or society.
Fortunately, this pattern is beginning to change. In the past decade, there has been a noticeable increase in the quantity and quality of novels for teens featuring main characters with disabilities. The range of those disabilities has grown beyond physical and sensory impairments to include developmental and neurological conditions such as autism/Asperger’s, mental illness, and addiction treated as mental illness rather than as the result of poor choices.
My own interest in the portrayal of YA protagonists with disabilities grew out of my having been diagnosed with Asperger’s syndrome, a mild form of autism, as an adult (though as a child and teenager, I was keenly aware of my difference from my peers). While my earlier YA novel Gringolandia ( 2009 ) includes a major secondary character with physical and emotional disabilities, the result of his imprisonment and torture during the Pinochet dictatorship in Chile, I wanted in my next novel to draw on my own struggles with understanding social rules and interactions. My greatest challenge in doing so was creating a likable protagonist, given that I had few friends at that age and most of my peers ignored or disliked me. When I enrolled in the MFA program at Vermont College of Fine Arts, I studied other YA novels featuring protagonists with disabilities to find examples with appeal to teen readers.
Former Schneider Family Book Award jury member Barbara Klipper ( 2011 ) writes that award winners “portray characters whose disabilities are part of a full life” (p. 6), characters who “are affected but not defined by their disabilities” (p. 7). These criteria offer general guidelines to make protagonists with disabilities real and appealing to readers, both disabled and non-disabled, but they are merely a starting point. Ginny Rorby’s Hurt Go Happy ( 2006 ), Jordan Sonnenblick’s After Ever After ( 2010 ), and Francisco X. Stork’s Marcelo in the Real World ( 2009 )—all winners of the Schneider Award—model the wide range of specific ways that YA authors depict their main characters with disabilities as both complex and likable, with unique strengths and weaknesses and the ability to bring about change in their own lives and in the lives of those around them.
Likability, Complexity, and Agents for Change
Complexity of characterization rests on a believable combination of likable and unlikable traits that are “at war, not simply with the world and other people, but with other traits, tendencies, and desires of our own” ( Burroway, Stuckey- French, & Stuckey-French, 2011, p. 131 ). Readers should be able to see something of themselves in the character’s desires, and at least some of the positive traits should be ones to which readers aspire. At the same time, characters should not be “too good to be true,” or in the case of the disabled characters of old, “too good to live.”
Writers who depict protagonists with disabilities face the challenge of creating characters who pass what Winifred Conkling ( 2010 ) calls “a three-point test of verisimilitude” (p. 4) that includes medical accuracy, emotional authenticity, and going “beyond stereotypes and clichés to create multi-dimensional characters who are more than a classic set of medical symptoms” (p. 5). Addressing emotional authenticity includes presenting character traits that may be considered highly unlikable, especially when depicting characters who suffer from mental illness, autism spectrum disorders, or the aftereffects of abuse. The real-life counterparts of such characters are likely to be detached, angry, aggressive, clueless, self-absorbed, or self-pitying, and for the writer to ignore those feelings reinforces the same stereotypes and clichés of the “too good to live” characters. Since physical attractiveness is a major source of likability, the creator of the realistic protagonist faces a different challenge if that protagonist suffers from cerebral palsy, pays no attention to his or her appearance because of mental illness or autism spectrum disorders, or is in some way disfigured. In addition, writers have the obligation to create a unique personality with negative traits that cannot be attributed to the disability so that the disability does not define the character.
At the same time, creators of protagonists with disabilities can select positive traits that dovetail with the unique challenges and complementary skills of persons with those conditions. For characters who by definition have experienced vulnerability and difficult and often unfair circumstances that might command the reader’s sympathy, the most compelling traits are ones that engage with the disability but do not focus directly on it, that represent the desire to overcome a challenge posed by the disability, and that utilize the character’s strengths to confront a problem more universal than the disability.
A Compelling Universal Desire and Plan to Attain That Desire
A disabled protagonist’s desire often centers on overcoming the disability, coming to terms with it, or achieving a goal made more challenging because of the disability. The best characterizations, however, connect the particular desire of the protagonist with a disability to desires that readers perceive as universal. Joey Willis, whose hearing impairment in Hurt Go Happy has left her isolated and the target of bullies, struggles against this isolation by learning American Sign Language against her mother’s wishes. Her defiance of her mother will resonate with teen readers who chafe against rules imposed by the adults in their lives. Jeffrey Alper, the cancer survivor in After Ever After , worries about passing the state standardized tests because chemotherapy has left him with learning disabilities. Readers concerned about their own performance on high-stakes tests or about the unfairness of those tests will connect with Jeffrey and his plan, both to prepare for the tests and, ultimately, to subvert them.
Perseverance and Determination
Classic literature is filled with disabled secondary characters who have resigned themselves to their fate. Whether they wallow in self-pity or cheerfully accept their lot as God’s will, they are passive and dependent on others. While accepting their differences and challenges—modern young adult fiction does not generally hold out the hope of a miracle cure in the way the titles examined by Keith do—likable protagonists doggedly pursue their other goals in spite of, or perhaps with the help of, their disability. Joey Willis is a model of such determination, first learning sign language to communicate with a neighbor’s chimpanzee and then traveling cross-country alone to rescue the chimpanzee who has ended up in a medical lab following the neighbor’s death. Marcelo Sandoval, the protagonist with high-functioning autism in Marcelo in the Real World , is equally dogged in his pursuit of justice for a teenage girl he has never met but sees in a photo at his father’s law firm. Even though he cannot walk three blocks without getting lost, Marcelo forces himself to journey all over Boston by public transportation to accomplish his mission.
A Sense of Humor
A sense of humor is crucial because people are generally uncomfortable when presented with the realities of illness and disability. A protagonist with a self-deprecating sense of humor acknowledges and defuses the discomfort that nondisabled people feel and is thus more likely to be liked. For example, Jeffrey Alper’s sense of humor wins him friends who then become his allies in his fundraising efforts for cancer research and in opposing the standardized tests that he is in danger of failing. His optimistic personality contrasts with that of his friend Tad, the novel’s other cancer survivor, whose sense of humor is much darker. Nonetheless, they bond with each other and with the reader who can laugh at Jeffrey’s self-deprecating jokes and Tad’s knack for saying the thing that Jeffrey (and many readers) wish they could say.
Being Loved and Admired by Others
Readers come to understand characters not only through their own words and actions but also through how other people see them. Particularly for characters with disabilities, if other characters love them and affirm their worth, readers are more likely to invest emotionally in these characters, regardless of how difficult or unsympathetic they appear to be. The neighbor and his chimp in Hurt Go Happy help Joey to connect with her surroundings and show her as a person who cares about others. Jeffrey Alper is one of the more popular students in his school, not because people feel sorry for him, but because he is nice to others, funny, and fun to be around. Although Marcelo, like Joey, has difficulty connecting to others, he earns his co-worker Jasmine’s friendship and admiration because of his kindness, loyalty, and sense of fairness.
Using One’s Abilities to Help Others in Need
Disability activists often refer to themselves as “differently abled,” pointing out that conditions such as hearing loss have led to the acquisition of new skills and the emergence of a distinct culture surrounding them. While she cautions against giving deaf characters “superhuman skills either in lipreading abilities or visual ability” (p. 25), deaf education professor and children’s author Jean F. Andrews ( 2006 ) writes that, “Authors overlook or barely touch on the everyday lives of Deaf individuals, which include positive features of Deaf culture such as the use of American Sign Language (ASL)” (p. 25). When characters use what they have to help others in need, they become likable and sympathetic. Not only are they taking positive action, they are also looking beyond themselves and their own problems to better the lives of others. All three protagonists in the novels I have mentioned use their unique skills to help others- Joey by communicating with the chimpanzee through ASL; Jeffrey through bicycling, a sport he has taken up because it “works” with his physical limitations (specifically his difficulty walking) and his need for exercise; and Marcelo through his obsession with “What humankind has experienced and said and thought about God” (p. 57), which ultimately becomes a quest for personal moral guidance.
Standing Up for What Is Right/ Defending the Weak and Powerless
Readers like characters who take a stand for fairness and justice, whether it be in their family, their school or sports team, their community, or the wider world. These characters offer models that help young readers to take action in their own lives.
Many novels for older children and teens published in recent years address the issue of bullying and feature young people who confront bullies. Those who are different and perceived as weaker—and persons with physical and mental disabilities are often in this category— have regularly served as targets of bullies and other predators who seek to enhance themselves at the expense of others. A character with a disability who stands up for him- or herself when targeted by a bully or predator elicits the reader’s admiration; a character with a disability who protects or seeks justice for others who are being bullied, cheated, or exploited regardless of the consequences to him- or herself is a genuine hero. Such a hero is Marcelo Sandoval, as he confronts the institutionalized bullying at his father’s law firm and then seeks justice for a disfigured young woman cheated by the firm.
While Joey, Jeffrey, and Marcelo exhibit positive traits, their characterizations have complexity . Each protagonist has weaknesses that make their triumph all the more compelling because they confront the things that are most difficult for them to do. At the beginning of Hurt Go Happy , Joey allows herself to be dominated by her mother and bullied by her peers. By secretly defying, and then openly confronting, her mother, she exposes her mother’s failure to protect her from her father’s abuse, which led to her hearing loss. No longer dominated by others, she takes control of her life and breaks the cycle of abuse.
Jeffrey’s weakness is his learned dependency, mostly on his older brother who has decided to travel in Africa for a year, but also on his friend Tad, who helps him with his schoolwork and expresses the feelings of anger that Jeffrey suppresses. In the course of After Ever After , he builds on his greatest strength, his social skills, to become an inspiration to and leader of his classmates.
Like Jeffrey and Joey, Marcelo exhibits both dependency and submissiveness. He backs out of a summer job at his private school because of his father’s demand that he work in the “real world,” and he does not initially stand up to the culture of bullying and harassment that pervades his father’s law firm. In the end, however, he chooses the side of the injured girl rather than his father’s firm, and he takes this principled stand knowing the harsh consequences for him and his family.
Ultimately, the three authors of these novels present their protagonists as agents of change . Given the history of characters with disabilities occupying passive roles, it is particularly important that today’s creators of such characters place them in active roles, something not all authors do. Sometimes, the first-person narrator of the story is not the story’s main actor, but rather an observer of the actions of others; this “outsider looking in” stance is particularly tempting when the character’s disability has resulted in exclusion or isolation. Beyond that, the protagonist has to effect internal or external change. If internal change is the goal, it should not occur through a cure; miraculous cures that result from a protagonist’s proper behavior or faith in God have a dated sensibility and imply that those who live with disability—that is, are not cured—are morally or spiritually lacking. Internal changes involving self-acceptance have the effect of making the novel “all about” the disability; in those cases, the disability defines the characters, the goals, and the story itself. Ideally, internal change should involve a personality trait or conflict unrelated to the disability, or one that existed before the disability manifested itself.
Hurt Go Happy, After Ever After , and Marcelo in the Real World feature protagonists with disabilities who act on the world and effect change not only in themselves, but also in others. The protagonists’ respective disabilities may play a role in initiating this change, but their efforts to do so benefit the non-disabled characters as well as themselves.
Using the Novels as Models
In creating Rogue ’s ( 2013 ) protagonist with Asperger’s, Kiara Thornton-Delgado, I drew on these likable characteristics, aspects of complexity, and elements of change that I identified in these exemplary novels. I gave Kiara a compelling universal desire and a plan to attain that desire. On the surface, her desire is to have a friend, and as she did with all the New Kids before him, she approaches and welcomes Chad as soon as he moves to her neighborhood. However, Kiara has a deeper desire based on her obsession with the X-Men, who are mutants with special powers that they use to save society and convince people not to fear and exclude them. Kiara believes she, too, has a special power, one that she still needs to find. While her peers shun her and her parents don’t know what to do with her, Kiara is not totally unloved. Chad’s younger brother, Brandon, and Mrs. Mac, a family friend, like and value her, and both believe that she is capable of doing great things even when she doubts herself.
Throughout Rogue , Kiara’s positive traits and desires are at war with her negative impulses. Like Marcelo Sandoval and Kiara’s heroes, the X-Men, she struggles with avenging her exclusion and other examples of unfairness that she sees around her, such as Chad’s abuse at the hands of his parents. Her anger, like Joey’s, which often leads to outbursts or secretive acts of defiance, are not stock traits of people with their respective disabilities but facets of their unique personalities, and Kiara, too, must learn to channel her anger in a way that leads her to a well-thought-out, principled stand, rather than a spontaneous tantrum. Her journey to find a friend and her special power leads her to internal change—as she learns that to have a friend, you have to be a friend—and change in the wider world—as she becomes the best friend that two abused boys can have. I hope that I did justice to the outstanding novels I used as models, as they showed me how characters with disabilities could cease being objects of pity and become agents of transformation to a more inclusive world.
Lyn Miller-Lachmann is a writer, teacher, and editor. She has published several novels for adolescents, including Rogue and Gringolandia .
Andrews, J. F. (2006). Deaf culture values through children’s fiction. MultiCultural Review, 15 (1), 25–36.
Burroway, J., Stuckey-French, E., & Stuckey-French, N. (2011). Writing fiction: A guide to narrative craft (8th ed.). Boston, MA: Longman.
Conkling, W. (2010). Creating verisimilitude in realistic young-adult fiction featuring protagonists with obsessivecompulsive disorder: A three point test (Unpublished master’s thesis). Montpelier, VT: Vermont College of Fine Arts.
Elwood, M. (1942). Characters make your story . Boston, MA: Houghton Mifflin.
Keith, L. (2001). Take up thy bed and walk: Death, disability, and cure in classic fiction for girls . New York, NY: Routledge.
Klipper, B. (2011). Great reads, intriguing characters: The Schneider Family Book Award winners. Young Adult Library Services, 9 (3), 6–7.
Miller-Lachmann, L. (2009). Gringolandia . Chicago, IL: Curbstone/Northwestern University Press.
Miller-Lachmann, L. (2013). Rogue . New York, NY: Penguin.
Rorby, G. (2006). Hurt go happy . New York, NY: Starscape.
Sonnenblick, J. (2010). After ever after . New York, NY: Scholastic.
Stork, F. X. (2009). Marcelo in the real world . New York, NY: Scholastic.
Additional Recommended YA Titles
Bray, L. (2009). Going bovine . New York, NY: Delacorte.
John, A. (2010). Five flavors of dumb . New York, NY: Dial.
Kelly, T. (2010). Harmonic feedback . New York, NY: Henry Holt.
McCaughrean, G. (2005). The white darkness . New York, NY: HarperCollins.
Roy, J. (2010). Mindblind . Tarrytown, NY: Marshall Cavendish.
Sáenz, B. A. (2009). Last night I sang to the monster . El Paso, TX: Cinco Puntos Press.