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Life in Inclusive Classrooms: Storytelling with Disabilities Studies in Education

Teaching Stories: Inclusion/Exclusion and Disability Studies

Linda Ware & Natalie Hatz

This research considers the journey of a public school teacher (Natalie) in partnership with her former undergraduate professor (Linda) to teach disability studies to her colleagues and to her fifth grade students. Our research involved multiple components and contexts that we characterize as “Teaching Stories” to consider disability, diversity, and exclusion across settings. Three components that we consider central to this research include: 

  • Collaborative mapping of the contexts that prompted our research. 
  • Collaborative co-teaching of three workshops open to all teachers, administrators, and staff included: (1) Self-reflection, examining our own biases about disability; (2) Using media to probe our understanding of disability; and (3) Disability-themed literature. 
  • Collaborative co-teaching with seven undergraduate students to develop and co-teach a ten-day curriculum unit to address disability studies through young adult literature (YAL).

These components are informed by multiple contexts that are not easily reduced to a bulleted list. For example, we consider aspects of the context for teacher preparation at the State University of New York at Geneseo, which in turn, includes reference to the college context; we consider the context of Natalie’s fifth grade classroom with reference to the district administrative context; and we consider special education, inclusion, and disability studies in both the local and larger contexts. This account is just one aspect of a much larger project in which classroom teachers have begun to engage in conversation on disability in K-12 public education as suggested in this special issue.

Project Motivation

Natalie had the kernel of an idea and proposed it to Linda when they met informally over a winter break. She had just completed classroom instruction using Petey, a young adult (YA) novel required for all fifth grade students in her school. The book discussed disability, yet she soon realized that the depiction of Petey and his life was framed by deficiency, needs, and powerlessness. Efforts to challenge these themes made Natalie realize that her students had little exposure to thinking about disability beyond stereotypical characterizations. The following excerpt appears on the book’s back cover.

Petey has spent his life in institutions. Born with cerebral palsy, he was misdiagnosed as an infant and grew up in mental institutions. As an adult, he is bound by his wheelchair and struggles to communicate with the people around him…. Petey is a touching story of friendship, discovery, and the domination of the human spirit over physical objects.  Petey (Mikaleson, 1998)

Natalie’s students included a mix of those with complex needs, some with Individualized Educational Plans (IEPs), others with 504 Plans (outlined in Section 504 of the Disabilities Education Act to ensure that a child who has a disability identified under the law and who attends an elementary or secondary school receives accommodations to give them access to the learning environment). Still other students had yet to be assessed, categorized, or labeled.

Natalie described her class as “inclusionary.” It was not officially distinguished as such by her school district although efforts were made to include students with disabilities in the general education setting to the “greatest extent possible.” The conversation on disability—informed by disability studies—was never made explicit in district policy or practice.

Now in her third year of teaching, and several years following her introduction to disability studies in education (DSE), Natalie wanted to explore critical disability themes with her students. In our enthusiasm to design the project for the greatest possible reach, we considered a district-wide theme of storytelling with the focus on disability. We identified potentially supportive teachers and administrators with whom we sketched out our “teaching stories” frame for a semester-long infusion of disability studies, titled “[Re]Thinking Disability in the 21st Century.”

In a meeting with the district curriculum director who ultimately approved the project, we scaled back our plans for a two-semester rollout, given that instructional planning would compete with the state testing calendar. Natalie would move from the story presented in Petey to a more contemporary account of disabled people telling their own stories, such as those featured in her prior coursework with Linda. Natalie recalled the challenge of encouraging new thinking about disability as DSE turns much of what we understand about disability on its head—hoping her students would accept the challenge of “rethinking disability.”

 Mapping the Context of Our Research Background

Natalie was among the first students Linda taught in the Geneseo school of education (SOE) following her move from City College/City University of New York (CCNY). Linda was head of the special education master’s program and with the enthusiastic support of colleagues, she led a major program revision that featured disability studies (Ware, 2013). At Geneseo, Linda taught one education course,  as she was tasked to develop courses for a new interdisciplinary disability studies minor. The then President and Provost recognized the potential for disability studies to enhance the liberal arts mission of the college. Linda developed two college-wide interdisciplinary courses, and one women and gender studies seminar infused with disability studies. She also integrated cultural perspectives on disability into her education course, “Arts and Career Education in the Community.”

Prior to Linda’s arrival, the course, a requirement for junior level special education majors, was known as “arts and crafts,” with a reliance on “puppets-glue-stick-play dough-coloring” activities. The non-academic content and activities, according to the program faculty, aligned with Council for Exceptional Children (CEC) standards and reflected the “arts” content provided to disabled students in the area. Given that Linda was hired on the strength of her research and publications specific to disability and the arts (Ware, 2008; 2010), she updated the course content. She minimized the rehabilitative focus that rendered: (1) “art” as therapeutic intervention; (2) “careers” as restricted to the local sheltered workshop experiences; and (3) “community” as contained by the four group homes located in the Village of Geneseo. The updated course interrogated the “problem of disability” approach sanctioned by medical, rehabilitative, and reductionist models and students were invited, instead to “imagine disability otherwise” (Ware, 2001).

Disability as Value-added Diversity

The context at Geneseo was aligned with more traditional course offerings and with programs that proved to be an obstacle to imagining “otherwise.” With the exception of Linda’s courses, disability was not viewed as part of the spectrum of human difference, nor was it considered underneath the umbrella of campus diversity. Inviting students to find “value” in disability involved recognition of the prevalence of deficit language that circulates in discussions of diversity and disability. Students were quick to recognize that campus discourse on diversity was exclusive to race, but they did not initially grasp how an exclusive framing of the “needs” of black families, the “needs” of urban youth, and the “needs” of those living in urban poverty contributed to the unyielding discourse of deficiency.

Area colleges had long utilized Rochester as a laboratory in which to “tackle” the burden of needs, including those posed by disability. Slowly we considered how diversity and disability were interchangeable “problems” in need of a “solution,” which often came in the form of a grant with funds targeted to support universities in the development of “interventions.” Local media and the college public information division reified the “needs/problem/intervention” narrative that slowly became more apparent to the pre-service students.

New activities were developed to trouble the over-reliance on rehabilitative frameworks that reified old conversations on disability as a curse, tragedy, or misfortune in need of a cure. Linda relied on disabled artists and performers to sharpen awareness and develop critical insights about the actual meaning of disability as “value-added diversity” (Ware, 2006a; 2010). Examples of communities that purposefully encouraged career integration experiences for disabled people (e.g., Visionaries & Voices, 2001; Puzzles Bakery & Café, 2008) replaced the regional norm where non-disabled people earned salaries to manage the lives of disabled people who worked in sheltered workshops for less than minimum wage.

The “hunt for diversity” assignment required students to research the Geneseo region (including the campus) for primary source documents that depicted the representations of difference in the example of diversity or disability. The exemplars could be either value-rich or needs-based depictions, those taken from archival representations or from the present moment.  

Students learned that increasing rates of rural poverty dot the region; growing numbers of itinerant farm laborers reside nearby with their families; downstate families relocate to the region when a loved one is incarcerated; and one student’s research captured what he referred to as the “herding of disabled adults” who are continuously processed through the “disability industrial complex”[1] (Snow, 2008). Others learned that very few Native Americans are enrolled in the local public schools even though tribal lands surround this region. That their indigenous history is excluded from the Geneseo teacher preparation curriculum was surprising. In a general response to this activity, one student explained the value of seeing beyond the “veneer.” The students’ research across multiple communities made evident the approach to disability and diversity that consistently failed to add value to the community of which they were a part.

The research activity confirmed the value of developing greater awareness of distinct and diverse populations nearby. The next step was intended to push pre-service teachers to imagine how their future students, who occupied these distinct cultural locations, might answer the question: “What does my presence and participation bring to this setting?” The question was often met with blank stares and clear difficulty completing the task. Natalie recalled the activity as particularly troubling because student frustration increased greatly at that juncture.

Most students could identify the ubiquitous use of discourses of deficiency in education, but they lacked the insight to value lives outside a normative existence. Linda shared this activity with colleagues during a SOE faculty brown-bag session where she was met with the same blank stares. Natalie was among the students who recognized the importance of teaching the development of critical insights on disability identity in much the same way we would teach critical thinking skills—whether to college or to fifth grade students—the goal wass to see beyond the “veneer” of manufactured identities (Solis, 2004; Ware, 2001).

Context Matters

School-based, collaborative researchers often insist that “context matters!” but it is rare to include problematic contexts within institutions of higher education – as if that “story” is somehow irrelevant. Through the cultural insights Natalie gained from disability studies in education (DSE) she learned to raise questions and to grapple with disability beyond the labels and categories. She completed the Geneseo program fully convinced that in the example of inclusion—neither general nor special education recognized its relevance (Baglieri, Bejoin, Broderick, Connor, & Valle, 2011; Ware, 2001; 2004).

Natalie’s new-found critical awareness influenced her decision to complete her student teaching in Brooklyn, NY. Following her success in that context, she was offered a temporary teaching position for the remainder of the school year. Natalie enthusiastically enrolled in every in-service workshop provided. Among her favorites were the “Teachers College Reading & Writing Project” (Lucy , “Units of Study” Heinemann); “Dialogic Teaching”; and “The Context for Learning Mathematics“  (Adler & Rougle, 2009; Alexander, 2008).     

When she returned to Geneseo this skillset led to quick employment and further opportunities to lead district workshops. Still her desire to introduce disability studies content to her students remained unrealized. Efforts to locate materials to teach disability studies to her students proved futile. Later, she and her colleagues would realize that materials couldn’t fill in the gaps in the absence of discussion on inclusion, disability, diversity, and disability studies.

Defining Inclusion and Exploring Disability Studies

Natalie and Linda organized three monthly workshops that were open to all administrators, teachers, and staff and structured in a seminar fashion. These were titled: “Self-reflection, examining our own biases about disability”; “Using media to probe our understanding of disability”; and “Disability-themed literature.” We reminded participants that this was not a canned in-service and that their words, thoughts, questions, and discomfort were all valued aspects of the work we hoped to accomplish.

We explained that discussion of inclusion would be a recurring thread throughout the workshops although it was not a stand-alone theme. Inclusion is difficult to define, and, yet, it is peppered throughout educational discourse in both general and special education. The district boasted of inclusion as a “core value” and yet the visible exclusion of students often went uncontested. We did not rehearse the decades-old debate on the meaning of inclusion, but made it clear that literature on exclusion as a common feature of everyday schooling practice informed this project (Baglieri, Bejoin, Broderick, Connor, & Valle, 2011; Baglieri & Shapiro, 2012; & Connor, 2010; Ware, 2004).

We began with the following writing prompt: “The simplest way to understand inclusion begins with recognition of the many ways that schools exclude certain bodies and minds. Reflect on this statement and identify what you might see in your school that ‘looks like exclusion.’”

  • Natalie had learned this activity from Linda’s course. The participants readily offered their responses, which Natalie listed as “sites of exclusion” on the whiteboard. These included:
  • Classroom activities that are difficult to perform with wheelchairs;
  • Pep rallies that begin before school starts, making them inaccessible for students who are transported; 
  • Too few accessible bathrooms;
  • Inflexible overhead lighting / not enough natural light;
  • Too much noise;
  • Assemblies that run too long and require those who are transported to leave early.

Participants were well aware of the issues. Names of students who repeatedly experienced exclusion were easily summoned. One teacher noted that “my daughter and her wheelchair can’t get into her friends’ homes when they host birthday parties.” In discussion, the participants considered various options to address exclusion, including raising awareness with families throughout the district.

Linda interjected to ask, “How do you think students might respond to a general discussion of access, or to discussions around particular activities?” We aimed to share relevant material between the in-service participants and Natalie’s students. We also included academic readings that we hoped would lead to understanding that these same issues were not fully resolved in higher education.

Assigned Readings and Teacher Meetings

Until very recently, critical perspectives on disability were elided from general and special education teacher preparation. We stressed this and provided readings to address the issue. A self-study conducted by faculty in the Inclusive and Critical (Special) Education Program at Teacher’s College (TC) served as a model to support program updates in teacher preparation.

According to TC Program Director Celia Oyler, faculty recognized the need to bridge what had been two distinct special education programs: “teachers must be able to examine cultural and social hierarches for the ways inequality and injustice are produced and perpetuated within the curriculum, the classroom, and the school” (Oyler, 2011, p. 205).

A “teaching tolerance” or “appreciating diversity,” liberal-humanist perspective is insufficient; preservice teachers must graduate from their programs with knowledge about how racism, sexism, ableism (Hehir, 2002), heterosexism, nationalism, linguistic privilege, religious intolerance, and class bias operate in schools and society. Teachers must also have the skills to recognize how these forms of oppression are commonly expressed in the curriculum and in day-to-day school practices (Hehir, 2002, p. 205).

The TC program had long endorsed the view of classrooms as sites of cultural and social reproduction (Bernstein, 1971; Bourdieu, 19777) and honored the relationships between and among families, communities and schools (Laureau, 2003). To this, Oyler introduced insights informed by DSE (Ware, 2007; 2010), specifically in Linda’s discussion of Critical Special Education (CSE) that evolved in response to (a) special education’s over-reliance on the medical model of disability; (b) the impulse to “fix” the unfit child; (c) the rush to equate human difference with limited capacity and individual pathology; and (d) the paradigmatic change that was urgently needed to coax the field away from its exclusively behaviorist and reductionist worldview (2010, p. 254). Oyler further drew on “equity pedagogy” (Banks and Banks, 1995) and DSE for program reform that would build on shared “commitment to a disability studies/disability rights orientation” (Oyler, 212).

Natalie and Linda connected Oyler’s “rights orientation” to their introduction of the DSE tenets[2] (DSE, Hunter College, 2012) and with specific reference back to the “sites of exclusion” list. Although Natalie was concerned that her peers would reject the claim that special education was incompatible with disability rights that did not occur. As our first meeting with the teachers drew to an end, participants were invited to consider the tensions/contradictions that could be more fully explored in further meetings in the weeks ahead.

The second teacher meeting opened with a powerpoint Linda used to introduce disability studies to Natalie’s students. It combined questions, definitions, and visual images to launch the conversation. In some images, the representation of disability was evident, but the characterization of the individual was ambiguous. For example, students were invited to describe photographs of two contemporary dancers, Homer Avila and Fabienne Jean. Avila, who lost a leg to cancer, was captured in a still image (rachelhoward.com Google image) while Jean was featured on the cover of the New York Times holding her prosthetic leg above her head (Winter, 2011). The discussion was framed to avoid the standard question, “What happened to you?” Instead, students were asked to focus on what they saw in the picture and to imagine a story based on those facts. That Fabienne Jean is smiling as she holds her prosthetic leg like a trophy intrigued the students and the teachers, who each offered explanations for her apparent joy.

“Book Briefs,” compiled from Natalie’s YAL literacy unit and prepared by the undergraduate teaching team, were also distributed. Again, the focus was not on the visible representation of disability in the novels, but on the characters. Themes relative to exclusion were identified by the participants, and considered in reference to the DSE tenets presented at the previous meeting.

The final in-service meeting took an unexpected turn when Mindy, a paraprofessional and enthusiastic participant, arrived with several grocery bags full of library books that featured disability. She wondered if, as a group, there would be time to distribute the books and make a quick assessment of their value as Teaching Stories. Of course, there was! By this time, the group dynamics were such that the participants expressed the desire for more time and deeper discussion of the complex meanings of inclusion and the broad exemplars to support DSE.

During the three in-service meetings we were met with the recurring question, “Why wasn’t this included in my teacher training?” It is a question that comes up frequently among those who teach from a DSE framework (Connor, 2010; Ferri, 2006; 2015 Valle, 2015; Ware; 2003; 2006). In the section that follows we capture the challenge that teachers face to unlearn much of what they have mastered in traditional teacher preparation. The material selected for this project is common in many schools, but the conversation that followed is not so common. Our approach to the conversations these texts elicited—among the educators and the students—was, we firmly believe, attributed to a paradigmatic shift in thinking about disability.

Teaching Stories

Dunn (2015) notes, that when teaching YA literature, it is assumed that teachers will raise “questions posed about [the works] to help students see, name, and confront harmful assumptions, whether about race, religion, sexual orientation, age, gender, or disability” (p. 148). Natalie’s familiarity with disability studies and her desire to integrate disability themes into her teaching did not prove successful when she taught Petey because she had not yet asked her students to consider questions about disability. But by this point in the school year, her students knew the dialogic thinking approach without the need for cues from Natalie.

• Ask questions.

• Develop logical reasoning.

• Think about an issue from multiple lenses.

• Cope when things are unclear and ideas conflict.

•  Seek complexity rather than simple answers.

• Challenge another’s opinion or viewpoint.

• Think flexibly.

• Listen for unusual perspectives. 

She was disappointed that her students focused almost exclusively on Petey’s disability. Efforts to encourage the students to consider Petey from “multiple lens” fell short as the students reverted to the terms from the book (e.g., retard, idiot, Cerebral Palsy, spastic). In a discussion of the family’s decision to institutionalize Petey, one student was adamant in his claims: “his family were farmers so he couldn’t help them farming.” It was the literal answer, but other contributions Petey made within his family did not figure into the text and students seemed particularly reluctant to think “flexibly” on such points. Online discussions of this award-winning book were unhelpful to Natalie as her concerns were not evident in those discussions.

There was so much in Petey that did not square with the perspective on disability that Natalie wanted to teach. She literally put the book down several times in frustration. Turning to her fellow teachers was not helpful as they were pressed to complete instruction prior to the winter break. They advised “It’s just not a very positive story”; “Why go there?”; “Just finish the book, Natalie!” 

When she contacted Linda, it was to verify the legitimacy of her concerns and to plot “strategies” for future use of this book. She decided to emphasize the historic context of Petey with an emphasis on why society no longer relies on institutions and discourages the language depicted in this book. In a workaround, she shifted her instruction to address the following:

• The origin of asylums and institutions at the turn of the century

• The impact of communication on understanding human difference

• The acceptance of social practices that enforced isolation of disabled people

• The potential for friendships across difference and disability

• The meaning of family responsibility

• The meaning of inclusion, and

• The impulse to bully people with disabilities.

Instructional Unit Overview on Disability Studies in YAL

In addition to the teacher meetings, Linda and Natalie created an instructional unit that considered disability studies in YAL. Linda recruited a pre-service teacher team (PSTT) comprised of current and former students to develop eight days of instruction that would be taught by the PSTT in Natalie’s classroom. Over thirty hours of preplanning discussion and curriculum development preceded the instruction, including mentorship from Natalie specific to her use of dialogic teaching strategies as inclusive pedagogy. Classroom instruction included a powerpoint overview on disability, art, and culture presented by Linda; and individual assignments following small group discussion of the books led by the PSTT. The PSTT made the book selections working from district-approved texts and in conversation with Natalie.

Dialogic Discussion as Inclusive Pedagogy

Natalie, Linda and the PSTT identified the instructional goals for the classroom teaching component of the project by explaining what we now referred to as the “Petey” incident. Natalie stressed:

I want my students to really examine disability as something that is made up. . . . I mean, I know it’s real, but at the same time it’s not. I think they can handle that conversation.

Members of the PSTT expressed similar concerns:

I want to teach about disability the way we talk about it in our class—as just one part, but not the only part—of a person’s identity. But will these young students grasp this content? Sometimes we don’t even know how to think about the conversations in class.

In all honesty, I don’t really know how I might begin to teach from a disability studies perspective. I don’t know how soon we can challenge medical views—or if the students even hold a medical view on disability in the first place.

Identifying Disability-themed YAL

 The PSTT began with an Internet search for disability-themed YAL. It generated many titles previously approved by Natalie’s school district. However, there was too little description of the characters with disabilities to assess the agreed-upon criteria for text selection: How do these texts problematize the very real consequences of marking difference as “problem” on the bodies of disabled children?

The books with the most favorable ratings were selected, only to find that they contained stereotypical and negative portrayals of disability. Rather than continue the search for the perfect book, Linda encouraged the PSTT to utilize the available texts, as this was the exact dilemma that Natalie had faced earlier. The PSTT felt confident examining the troubling aspects of the texts as readers, but less confident teaching the book. We agreed to find at least one book with value-rich depictions of disability, which led to Linda’s suggestion of The Curious Incident of the Dog in the Night-Time (Haddon, 2002).

Below we capture examples from the books of the medicalization of disability and the consistent use of ableist language. Consider that the emphasis on disability “ailment” in these plots operates in much the same way that labeling operates in traditional teacher education preparation and practice (both general and special education) which, in effect, “misreads” people with disabilities as the product of misfortune and less worthy lives (Elman, 2010; Solis, 2004). Additional text samples reveal bold and rich narrative possibilities that could be mined for deep meaning in the classroom (Ware, 2006b; 2013).

Stuck in Neutral

Stuck in Neutral is the heartbreaking tale of a young boy, Shawn, who
has cerebral palsy and who is profoundly developmentally delayed. However,
inside his broken body, Shawn believes himself to be a genius due to his ability
to remember everything he has ever seen or heard. (http://www.bookrags.com/studyguide-stuck-in-neutral/#gsc.tab=0)

Stuck in Neutral Sample Text

[I]n the eyes of the world, I’m a total retardate. A “retard.” Not retard” like you might use the word to tease a friend who just said or did something stupid…. everybody who knows me, everybody who sees me, everybody, anybody who even gets near me would tell you I’m dumb as a rock. (p. 4)

I do sometimes wonder what life would be like if people, even one person, knew that I was smart and that there’s an actual person hidden inside my useless body; I am in here, I’m just sort of stuck in neutral. (p. 11)

In my father’s eyes I’m a vegetable, a human vegetable, I’ll never be able to enjoy life or be productive. (p. 25)

When people first meet me, they usually do their Annie-Sullivan meeting-Helen-Keller-in-The Miracle Worker routine. “HI SHAWN, NICE TO MEET YOU…MY NAME IS ALLY WILLIAMSON…HOW ARE YOU?” For some reason people always speak real slowly and loudly when they’re introduced to me. (p. 55)

Instructional themes: Perceptions of suffering, perceptions of competence, perceptions of communication exclusive to speech; the impulse to pity people with disabilities; disability in the schooling context; medical versus cultural meanings of disability; and claiming disability as a source of strength and power.

Freak the Mighty

In Freak the Mighty, “primary characters are friends Maxwell Kane, a large, very slow, but kind-hearted kid and his friend Kevin Dillon, nicknamed ‘Freak,’ who is physically crippled but very intelligent” (http://www.bookrags.com/studyguide-freak-the-mighty/#gsc.tab=0).

Freak the Mighty Sample Text

I never had a brain until Freak came along and let me borrow his for a while, and that’s the truth, the whole truth. (p. 1)
I got my first look at Freak [in] that year of phony hugs. He didn’t look so different back then, we were all of us pretty small…. (p. 2)
I feel real bad for Freak, because he hates it when people try to rub his head for luck. (p. 72)

The only reason I got passed from seventh grade is because they figured this way the big butthead can be—quote—someone else’s problem, thank God, we’ve had quite enough of Maxwell Kane—unquote. (p. 73)

Instructional themes: Family relationships when disability is present; perceptions of self versus society’s perceptions; friendships across differences; accepting difference; disability in the schooling context; bullying disabled people; and claiming disability as a source of strength and power.

The Curious Incident of the Dog in the Night-time

The Curious Incident of the Dog in the Night-time is a story about a unique young man setting out to solve an unusual crime and to record his progress in a novel. The young man is Christopher John Francis Boone, and he is unique because he is severely autistic. (http://www.bookrags.com/lessonplan/the-curious-incident-of-the-dog-in-the-nightime/#gsc.tab=0)

Numerous lessons are available on-line for classroom use of this widely acclaimed novel, many of them considering autism to be the focus. Yet Haddon makes no specific mention of autism in the novel; in fact, Haddon went to great lengths to explain why he did not label Christopher as autistic (McInerney, 2003; Noonan, 2003; Ware, 2006b). When teaching the novel for this project, Linda encouraged the PSTT to likewise avoid characterizing Christopher as autistic. However, just a few pages into reading the book, students demanded verification that Christopher was autistic. The impulse to recognize Christopher as autistic rather than the richly layered character offered by the narrative presented a brilliant starting point, and one that we could never have anticipated.

Curious Incident of the Dog in the Night-Time Sample Text

All the other children at my school are stupid. Except I’m not meant to call them stupid, even though this is what they are. I’m meant to say that they have learning difficulties or that they have special needs. But this is stupid because everyone has learning difficulties because learning to speak French or understanding relativity is difficult… (p. 43)

 So I took deep breaths like Siobhan said I should do when I want to hit someone in school and I counted 50 breaths and did cubes of the cardinal numbers as I counted like this .. 1, 8, 27, 64, 125, 216, 343, 512, 729, 1000, 1331, 1728, 2197, 2744, 3375, 4096, 4913 … etc. (p. 213).

Instructional themes: The search for order and stability; perceptions of social behavior as an indicator of intelligence/ability; social injustice; Christopher’s perception of ability; his perception of disability; disability in the schooling context; and claiming disability as a source of strength and power.

Discussion

The students responded to these texts with a mix of reactions: some accepted stereotypes on face value, some saw past the stereotypes and responded to the characters as more like themselves than they initially imagined; and others made bold connections to disability and to the world around them.

Shawn’s interpretation of his imminent death at the hands of his father in Stuck in Neutral was probed by questioning: “Is this a plausible plot?” Consistent with dialogic discussion, the students formulated a question that they then grappled with, offering various responses, including those related to Shawn’s limited cognitive capacity given his inability to speak. Their ableist assumptions came unhinged as, newly informed about assistive technology, they recognized Shawn’s humanity and his ability to communicate despite his lack of traditional speech. They discussed the meaning of intelligence. One student laughed aloud as he read Shawn’s depiction of his “condition” because the details were witty, sarcastic, and self-mocking—attributes many middle school students shared with Shawn—despite his disability. These “personality traits” were clear signs of Shawn’s self-awareness and his humanity, they argued, and in discussion, they redefined intelligence, spirit, soul and questioned the meaning of normalcy and their own neurotypicality.

The students readily identified the negative perceptions of Shawn held by other characters as dehumanizing and infantilizing (vocabulary that emerged from their discussions and our instruction). They debated how others, especially his father, could view him as an object of pity and less than human. For one assignment, they wrote poems about Shawn, informed exclusively by his self-narration and without focusing on his impairment and his disability. In a prewriting session students debated whether Shawn’s physical appearance was or was not an indicator of his intelligence, and this led to an in-depth conversation about the social pressure to judge appearance. In dialogic discussion, one student outlined the many ways that stereotypical appearances are perpetuated. His list included: bullying in schools, fashion trends in schools, advertisements in the media, and racism that still exists today.

Such exchanges in small and large group discussion revealed the complex thinking that Natalie knew her students possessed, yet their ability to link disability discourse to larger social issues was surprising to all of us. Parallels to Linda’s Geneseo coursework became more apparent as this unique mix of disability-related content proved to be another long overdue conversation on disability, exclusion, and social injustice that all students are in fact, able to consider.

Discussion of Freak the Mighty focused on Maxwell’s placement in a Learning Disability (LD) class, on what LD really means, the everyday use of “retarded,” and speculation about Kevin’s claims to a robot identity rather than a “crippled” identity. Discussion of disability and ability encouraged students to speak freely, ask honest questions, and not be judged. Discussion on the historic context of language usage prompted one student to refer back to Petey, wondering if contemporary use of “demented” would be considered offensive, noting that in the novel, it seemed acceptable.

In the discussion about The Curious Incident of the Dog in the Night-time, students responded to the question, “In what ways are you like Christopher?” It is important to recall that initially some of Natalie’s students insisted on knowing whether Christopher was autistic. One student said, “I am like Christopher because he does not like being touched. I like to have my own space. I also think that Christopher is very independent. I would also prefer to be independent.”

Another noted: “I know what it’s like to be away from someone you love. My dad is in Afghanistan and I miss him the way Christopher misses his mom.”

We probed the obvious link to contemporary use of the “R” word, inviting discussion that was again much more sophisticated and nuanced than we anticipated in our planning. One student asked, with the utmost sincerity, “If the LD class is for students who learn differently, why isn’t it called the ‘Learning Differences’ class?” Students rallied in agreement and moved to act on this issue, inviting the principal to hear their concerns. Taking turns they held up their placards that read: “Learning disability implies “no ability” which just isn’t true!” “Changing the name to ‘Learning Differences’ is necessary because society is too quick to put the label of disability on a person.” Finally, a quiet-voiced student presented her image of a wheelchair and reasoned that similar to wheelchair users, students with learning disabilities did not choose to have the disability and therefore should not be marked by the label of “learning problems.” By a vote—including that of the principal—the students pressed to reappropriate the meaning of LD—at least in their school.

Conclusion

We have captured only a fraction of our instruction that attempted to teach that students with disabilities can be “valued members of our schools and classrooms—not because we are charitable, but because students with disabilities, like all students, have a lot to offer” (Ferri, 2008, 427). This curriculum exploration of disability in YA literature would not have been possible in the absence of an administrative vision that holds to the belief that “all students have a lot to offer.”

The importance of locating the goals of inclusive education squarely in the curriculum for consumption by all students can begin to challenge disability as a taboo topic. Until schools address the omission of disability history, art, and culture in the curriculum, where the real work of inclusion begins, society will continue to view disability as a devalued experience. This project is one step toward the larger goal: recognizing that in order to allay the stigma associated with disability, children and youth must be permitted to appreciate the story of disability as another aspect of human diversity—one made explicit in the curriculum of inclusive schools through a disability studies framework.[3]

 


[1] Snow outlines the growth of the “pro-business” model that has replaced the “human services” model of disability supports. She recounts how services that agencies once took pride in delivering, whether it was speech services or mobility equipment, are now profit-driven. “Service providers,” she insists, can “outright fail their customers, yet stay in business!” In one example, Snow discusses the “dismal outcomes” for students who receive special education services and their “shameful” 75% unemployment rate. Her critique also takes aims at vocational rehabilitation, which like special education, continues – undeterred by its failure to provide meaningful outcomes for disabled children, youth, and adults.

[2] The DSE tenets were authored by members of the Disability Studies in Education (DSE) Special Interest Group (SIG) of the American Education Research Association (AERA). These tenets capture DSE efforts to promote the understanding of disability from a social model perspective, drawing on social, cultural, historical, discursive, philosophical, literary, aesthetic, artistic, and other traditions to challenge medical, scientific, and psychological models of disability as they relate to education. The four tenets apply to our efforts to engage in research, policy, and action that

  • contextualize disability within political and social spheres
  • privilege the interest, agendas, and voices of people labeled with disability/disabled people
  • promote social justice, equitable and inclusive educational opportunities, and full and meaningful access to all aspects of society for people labeled with disability/disabled people
  • assume competence and reject deficit models of disability.

[3] The authors are grateful to the anonymous reviewers who provided very helpful comments and encouragement, and to readers for welcoming our work. In addition, our work was enthusiastically supported by Lisa Moosbrugger, former Curriculum Coordinator and now Principal, Lima Primary School, Honeoye Falls-Lima Central School District.