Children with Disabilities in Books: Then and Now
By Alexandra Jefferds
“Individual and Social Experience of Disability”
University of Pittsburgh School of Health and Rehabilitation Science
Dr. Katherine D. Seelman
This review examined trends in short children’s picture books written from the late 1960s until the present time, with the intent of deducing from their contents contemporary educational theories and perceptions of disability. Numerous books, addressing physical impairment, blindness, deafness, and cognitive impairment, were evaluated. In addition, online reviews by adult readers (educators, parents, therapists, and others) were examined. It was discovered that books written prior to 1980 tended to be of a dry narration style and contain many facts about the medical and social aspects of the lives of the children depicted. These books “educated” rigorously in the spirit of the c. 1980 culture of disability interventions. Some books written after 1990 followed this model as well, but others told a richer story in which a character’s disability was not the sole focus. Adult reviewers gave praise to both types of books, but the most enthusiastic reviews were reserved for books that heavily emphasized the social aspects of disability. This may represent a recognition that socially-oriented books provide a rich opportunity for child readers to learn tolerance.
Children with Disabilities in Books: Then and Now
Children’s books that address disability frequently do it in one of two ways: Through fiction in which a character has a disability, and through non-fiction that illustrates how a child with a disability goes about his or her daily life. Beyond that, there is great variety among books. Some are quiet, introspective, sensitive, and written to instruct children about someone “special.” Others attempt to open children’s minds using humor. Differences between books published over the years may reflect concurrent changes in educational theories, perceptions of disability, and authors’ expectations of young readers. Ultimately, the effectiveness and appropriateness of each book (as perceived by educators, parents, therapists, and others) is a reflection of current sensibilities about how disability should be explored with children.
An article recommending picture books to educate children about disabilities (Hopkins, 1980) served as a starting point for compiling a list of older titles. The article named books in four main subject areas: physical impairment, blindness, deafness, and cognitive impairment. Once a tentative selection of pre-1980 books had been created, Amazon.com and other websites were searched for more recently published (post-1990) children’s books in the same four subject areas. These two lists were honed based on which books could be requested through the Carnegie Library of Pittsburgh, because purchasing books for review was not preferable. During the literature search process, the researcher was given one book as a gift, and this title was also considered because it fit the general criteria of the search. Most of the post-1990 books that were found focused on a single character with a disability, so for symmetry in the analysis, the pre-1980 set was limited to those that followed this construct. Chapter books, long picture books, and books that were of a purely didactic rather than narrative nature were eliminated. For example, What If You Couldn’t? A Book About Special Needs (Kamien, 1979) was not used, but Janet at School (White, 1978) was included. Both books were nonfiction, but the latter focused on a single child, while the former was a chapter book that addressed multiple disabilities. The two sets of books were finalized according to a number of criteria. All four subject areas described in the Hopkins article were included. In some cases, preference was given to a pair of books (one of each set) when the researcher discovered a similar plot element, narrative style, or message in each. This was done so that a direct comparison could be made between the two authors’ treatments of this element. The pre-1980 and post-1990 lists were finalized to contain varying educational philosophies and narrative styles, and address a variety of different disability categories. The lists were not exhaustive due to the large availability of materials. Rather, they reflected the researcher’s interests and sensibilities as a rehabilitation engineering student. Ultimately, each book was selected because the researcher believed it could contribute to the analysis in a meaningful way. Each book was read and evaluated by the researcher, as objectively as possible using her disability studies and rehabilitation experience. An article on evaluating the quality of children’s books about mental disability (Heim, 1994) was referenced. This article recommended five criteria to judge the merit of a book: “accuracy of information” (p. 139), “lack of stereotypes” (p. 139), “literary quality” (p. 139), “confronting the disability” (p. 140), and “not ‘using’ disabled characters” (p. 140). Because these guidelines mainly focused on the issue of respect, they were considered applicable to all books in the analysis, irrespective of the disability discussed. To explore the public’s perception of the book selection, Amazon.com reviews were examined, when available. Such reviews were found by searching for a book’s title (sometimes in conjunction with the author), clicking on the appropriate result, and scrolling to the bottom of the page. When a book did not have reviews on this website, the broader internet was searched for a review.
Books for children about physical impairment included Tracy (Mack, 1976), Janet at School (White, 1978), Rolling Along: The Story of Taylor and His Wheelchair (Heelan, 2000), and ZOOM! (Munsch, 2003). Tracy and Janet at School are similar in style and content. Both are factual books about the daily lives of girls with congenital impairments, and both portray the girls engaging in school activities with and without their wheelchairs. The narratives are relatively bland and there is an emphasis on facts. In contrast, the recent books with physically impaired protagonists have richer, more fully rounded storylines. Rolling Along depicts Taylor, an African-American boy with cerebral palsy, interacting with his peers. Taylor contemplates accessibility and confronts his friend’s belief that his use of a wheelchair is a tragedy, when in fact it allows him to move around faster and participate more. Amazon.com reviews were unanimously five-star, with readers praising this book’s attention to wheelchair accessibility and social interactions (Curatti, 2000; Library Gaga, 2005). ZOOM! is a fictional story in which a girl goes to a sparkling “wheelchair store” (p. 6) and rejects wheelchair after wheelchair because each is “too slow” (pp. 8, 10, 12, 30). Eventually, her need for speed saves the day when she takes her brother to the hospital. The worst repercussion of her disability is a speeding ticket. The book does not directly confront the realities of disability, but it is a humorous story told from a completely non-medical perspective. It portrays a child as a hero (not due to her disability, but her actions) who contributes to her family’s wellbeing. One Amazon.com reader loved that it doesn’t try to convey a message (Paper Pen, 2006), and another praised the fact that the author “recognizes the sensational independence that the wheelchair brings” (Beck, 2004d).
No books about blindness published after 1990 that fit the other review criteria were found. Books that were found included Sally Can’t See (Petersen, 1974), The Seeing Stick (Yolen, 1977), and Knots on a Counting Rope (Martin & Archambault, 1987). This last book did not technically meet the review criteria (it was published neither pre-1980 nor post-1990), but the apparent scarcity of modern picture books about blindness, and the book’s status as a Reading Rainbow television show featured title, compelled the researcher to include it. Sally Can’t See (Petersen, 1974) depicts Sally as a girl who is capable of learning in ways that do not require sight. However, that message is perhaps the only positive part of the book. The book edges on the melodramatic, constantly reminding readers that she is doing all of these positive things despite her impairment. There is always a sighted friend or caring adult close at hand to make her feel confident, help her stay safe, or assist with an art project. Through careful tutelage, she has learned slowly what other children learn quickly. The reader might be led to believe that Sally’s entire life is an educational exercise. The Seeing Stick (Yolen, 1977) takes the reader to ancient China, where the emperor is concerned for his blind daughter. He searches far and wide for someone who can help her. Eventually, an old blind man teaches her to “see” with her fingers. The princess is portrayed as a delicate, virtuous young creature. Similarly, the old man is full of wisdom and compassion. Though these are stereotypical portrayals of blindness, the power of the book emerges through the fact that one blind person helps another. Knots on a Counting Rope (Martin & Archambault, 1987) is the story of a blind Navajo boy whose grandfather tells him the story of his birth and upbringing. The boy delights in hearing once again how he is able to thrive as a member of his Native American community thanks to the power of the blue horses that lend him his name. He is shown participating in tribal events and learning to use his other senses to navigate his home region on horseback. Most Amazon.com reviewers found the story to be a beautiful and respectful story about a boy, but more than one person described the book as a gross misrepresentation of Navajo culture (Ernst, 2001; Fowler, 2006).
Books about deafness included Lisa and Her Soundless World (Levine, 1974), My Sister’s Silent World (Arthur, 1979), Dad and Me in the Morning (Lakin, 1994), and Elana’s Ears (Lowell, 2000). Numerous other books were available, though many were similar to these in tone and treatment of the subject matter. These four were chosen as a representative sample. My Sister’s Silent World bears a resemblance to Janet at School, Tracy, and Sally Can’t See in that it is a factual narrative about the daily activities of a child with a disability. As the title suggests, it is told from the point of view of a sister. The book addresses the fact that deafness cannot be seen, and describes the various ways that the narrator’s sister communicates. It is an optimistic book that addresses bullying but emphasizes how ordinary the narrator’s sister really is. In contrast, Lisa and Her Soundless World depicts a dismal picture of deafness. It begins by presenting a presumed unimpaired reader with several pages of explanation of how the reader is lucky to have five senses that work. Deaf Lisa, however, is not so lucky, because she has always been the target of relentless teasing and isolation. However, when she is diagnosed as deaf at the preposterously old age of seven (by a doctor who can tell instantly what her parents could never figure out), everything changes. She gets hearing aids, jumps for joy, listens gleefully to the ordinary sounds around her, and begins learning to talk with the assistance of professionals. The book ignores the realities of child language development and is rife with melodrama. The book is out of print, but it still has one review on Amazon.com. The reader appreciated the book’s explanation of how assistive technology can be used to compensate for lost senses (Elainaxyz, 2001). Elana’s Ears also describes the process of a girl being diagnosed as deaf, but this time the story is told from the point of view of her family’s dog. Elana is diagnosed at age two, after her parents suspect she cannot hear. The fact that Elana’s parents suspect something is more realistic than the doctor-centric premise in Lisa and Her Soundless World. Elana’s Ears depicts the friendship between a girl and her dog, and portrays both characters as having distinct, quirky personalities. Amazon.com reviews were generally positive but not passionate. One person appreciated that the book addresses sibling rivalry in addition to deafness (A Customer, 2000). Dad and Me in the Morning begins not with a baby’s diagnosis, but with an older boy jumping out of bed to go watch the sunrise with his father. The boy puts on his hearing aids, uses a number of ways to communicate with his father, and employs all of his senses to enjoy the morning. It is a beautifully illustrated and narrated book about an ordinary boy who happens to be deaf. It transcends the need to “confront” the disability because the disability is not what drives the story. Amazon.com reviews (some by members of the Deaf community) were very positive, and particularly appreciative of the father character’s willingness to learn and use sign language with his son (Walker, 2000; Beck, 2004a).
There were numerous books about cognitive impairment. As with deafness, a representative sample had to be selected. These were: One Little Girl (Fassler, 1969), Don’t Forget Tom (Larsen, 1974), My Brother Steven is Retarded (Sobol, 1977), Be Good to Eddie Lee (Fleming, 1993), and Ian’s Walk: A Story About Autism (Lears, 1998). One Little Girl is the story of Laurie, whose many capabilities are overshadowed by poor performance in school. The inside front of the book jacket describes Laurie as “somewhat retarded,” but from a modern perspective, the book reads more as a story about learning disabilities. In either case, its message is clear: negative attitudes and labels can hurt a person’s self-esteem. This is another book in which a doctor provides a diagnosis. In fact, it is his advice that catalyzes a change in the way that Laurie’s family views her abilities. Don’t Forget Tom follows the familiar format of describing a child with a disability’s day. While the book is mainly a description of one boy with Down Syndrome, the text jumps twice to a discussion of children with cognitive impairments in general. This strategy might give readers the impression that all people with this type of impairment are alike, and that it is appropriate to generalize. Furthermore, the book was translated from Danish in an oddly formal, stilted voice (using the word “for” to mean “because”), which might not appeal to modern readers. My Brother Steven is Retarded would require some preface if read to children today, if only for the outdated terminology used throughout the book. People-first language is not used, and the term “retarded” is use to describe cognitive impairment. The content of the book is not obsolete, however. It is a remarkably honest portrait of a girl describing her brother’s disability and its impact on her own life. She admits that “I’d rather it were Steven than me” (p. 11), describes the embarrassment of being seen with him in public, but also says she enjoys making him happy. In a New York Times article (Brooks, 1986), the book was recommended for siblings of people with disabilities. Be Good to Eddie Lee is the fictional story of a boy with Down Syndrome whose presence initially impedes a girl and her friend’s efforts to enjoy a romp through the woods. Eventually, however, the girl realizes that Eddie has a lot to offer and comes to value his company as well. Eddie proves himself to be a worthy playmate by showing that he has a host of unusual skills (e.g., catching salamanders) and demonstrating exceptional kindness. This combination of traits seems very forced. The book would have been more powerful if Eddie had shown his capabilities through self-expression or creativity. As it is, the girl’s character grows immensely with her appreciation of Eddie, while Eddie merely reveals himself to be more capable, intelligent, and saintly than his unflattering description at the beginning of the book suggests. Amazon.com reviewers were divided; eleven praised the book for being “touching” (Teacher La La, 2007), “heart-warming” (ADH, 2006) and “sensitive” (Allen, 2006) but several panned it on the basis that it is “condescending” (Beck, 2004c; Wheat, 2005), full of insulting language (Beck, 2004c), and perpetuating stereotypes (A Customer, 2001). A premise similar to the one in Be Good to Eddie Lee appears in Ian’s Walk, in which a sister is initially embarrassed about the behavior of her brother, who has autism. However, in the course of an eventful afternoon, she becomes more accepting of him. This book is less sticky-sweet than Be Good to Eddie Lee because the sister’s transformation occurs without Ian “proving himself” or exhibiting a saintly demeanor. Amazon.com reviews were mostly positive, though two readers cautioned that Ian’s behaviors should not be taken as universal (Beck, 2004b; A Customer, 1999).
An examination of the literature indicates that authors’ strategies for teaching children about disabilities have changed over the last several decades. Books written prior to 1980 reveal a drive by authors to teach with factual stories and confront disability head on, in as much detail as the format of a children’s book permits. Information about a child character’s disability as well as his or her interests and family are frequently discussed. Very rarely are these books of high literary quality, nor are they particularly offensive. The dry narration style may reflect educational theory of the time. Circa 1980, there was a heavy focus on “intervention programs” for disability (Ferguson, 2001, p. 374). It was believed that disability could be compensated for by intensely educating all parties involved in the child’s upbringing. Books that speak to non-disabled children specifically (Lisa and Her Soundless World, Sally Can’t See) are part of an effort to educate the larger community. However, this feature is concerning because it alienates readers with disabilities. Furthermore, the danger of resorting to melodrama—a slippery slope toward pity—is high. The author’s choice of narrator can also influence how respectful a book is toward its characters and readers. Heim (1994) was concerned that books with sibling narrators use the child with the disability to the exclusive benefit of the sibling’s social growth, and this may be true in some cases. In the pre-1980 set, books with sibling narrators focus on describing the child with a disability’s likes and dislikes, and neither the subject nor the narrator evolves very much. Sibling or friend narrators in the post-1990 set (Be Good to Eddie Lee, Ian’s Walk, Elana’s Ears) often make some kind of progress toward accepting the child with the disability. The analysis done for this review suggests that sibling narrators are most appropriate if the book is clearly targeted at siblings, as in My Brother Steven is Retarded. However, if the author’s intention was to educate readers about a disability, then narration from the perspective of the character with the disability is perhaps a more respectful tactic. Books which place readers in the protagonist’s shoes, wheelchair, or hearing aids run less risk of alienating readers with disabilities—the group who could potentially identify with the characters the most. The books about blindness seem to be slightly ahead of their time; more than one book written prior to 1990 (The Seeing Stick, Knots on a Counting Rope) had a substantial plot and blind protagonists. This is an unexpected finding because traditionally, blindness has been considered one of the more abysmal, pitiable afflictions (Albrecht, 2005). Perhaps fewer books about blindness have been written recently because authors have not perceived the need for new ones. It is interesting to note that no books told from the perspective of a child with a cognitive impairment were found. This may represent a literary bridge that has not yet been crossed. The positive tone of most online reviews indicates that, on the whole, modern adult reviewers (who include parents, teachers, and therapists) are forgiving of minor inaccuracies and outdated terminology as long as the book serves some perceived educational purpose. Likewise, the pre-1980 books, which have few online reviews, still appear on recommended reading lists about disability. It may be that because there are relatively few books about some disabilities, readers welcome whatever exists. Highly negative reviews were only given when reviewers perceived gross inaccuracies or severe inappropriate portrayal of characters. An analysis of modern readers’ perceptions of the pre-1980 books was not possible because few online reviews for these books were found. However, the analysis of reviews of the post-1990 books suggests that while readers welcomed stories that addressed the medical aspects of disability, the most enthusiastic reviews were reserved for books that focused on the social aspects of disability. For example, applause from within the Deaf community for Dad and Me in the Morning is high praise indeed, given the pride that Deaf individuals have for their culture (Albrecht, 2005b). Rolling Along was commended for its attention to wheelchair accessibility, and ZOOM! for its zany, entirely non-medical premise. Adult readers may find these books appealing because they believe social topics, rather than medical details, provide more effective, engaging opportunities for children to learn tolerance. This new writing strategy does not automatically make for better books, of course, because any story is potentially vulnerable to author prejudices and misconceptions. It remains the responsibility of children’s authors to craft stories of literary merit, to depict disability accurately and respectfully, and to cultivate tolerance without perpetuating stereotypes.
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