Mainstream research that examines relations between students with significant disabilities and their peers continues to assess such relations on the capacity of students with significant disabilities to evoke and sustain them. This article adopts a disability studies approach to situate peer relations within the larger classroom context. The author draws on the data collected from a qualitative study that investigated the participation of a student with significant disabilities, Harry (a pseudonym), in an inclusive 1st-grade classroom. The author describes peer relations with Harry as embedded within the paradigmatic “family” narrative within this setting. Despite its benefits, the adherence to a normative framework within this family narrative constrained Harry's participation and the kinds of relations that evolved between him and his peers.
The placement of students with significant disabilities in general education classrooms is by no means a universally accepted norm, as testified by the large numbers of self-contained programs that continue to operate around the nation. For many of these students, the rigid adherence to a functional approach premised on the notion of creating useful citizens that has historically excluded individuals with intellectual disabilities from mainstream life continues to frame their educational experiences today (D. L. Ferguson, 1987; Trent, 1994). However, a growing number of studies have documented the benefits accrued by students with significant disabilities as well as their peers when they are included in general education settings (Fisher & Meyer, 2002; Peck, Staub, Gallucci, & Schwartz, 2004). Increasingly, research that addresses key elements of educational programming for these students presumes accessibility to general education settings for them (e.g., Cushing, Clark, Carter, & Kennedy, 2005; Downing, 2002; Kennedy & Horn, 2004; Palmer, Wehmeyer, Gipson, & Agran, 2004; Ryndak & Billingsely, 2004).
As more students with significant disabilities receive some, if not all, of their education in general classrooms, there has been an increased interest in examining the effects of such inclusion on their peers in the classroom who are not disabled. The lens of friendships has remained an important medium for assessing the impact of inclusive practices on peers (Kishi & Meyer, 1994; Meyer, 2001; Salisbury & Palomboro, 1998; Staub, Schwartz, Gallucci, & Peck, 1994). These studies have raised the concern of maintaining relationships beyond specific integrated experiences, described the varied roles adopted by peers in relating to classmates with significant disabilities, and documented the changing nature of those relations. Although several of these studies have also implicated the educational practices that have framed such inclusive efforts, the focus on friendships has increasingly directed attention to the capability of the student with significant disabilities to evoke and sustain meaningful relations with nondisabled peers. Subsequent research has often emphasized building or reinforcing the “social competence” of students with significant disabilities, so that favorable relations can more predictably occur (Carter, Hughes, Guth, & Copeland, 2005; Kennedy, 2004). This approach, however, reinforces the “problem-within-the-student” concept and deflects attention from the ways in which the setting itself may contribute to the severity of the disability.
Schnorr's (1990) work on the inclusion of a student with Down syndrome, “Peter,” in a first-grade classroom, however, departs from such a perspective. Her study examined peer responses to Peter in relation to the educational practices that framed the experiences for all students. Her findings suggested that although the growing trend in inclusive schooling promises the generation of new narratives of significant disability, the specific contours of such practice may not always serve this desired end. This study extends the work of Schnorr and examines the narratives of peers to understand the effects of inclusive practices.
A Narrative Approach
The main purpose of the study was to investigate how peers made sense of their classmates with significant disabilities. This sense-making activity was presumed to be reflected in their words and their actions that were then collectively understood as the narratives generated by them. The term narrative is used here, therefore, to refer not only to the written or verbalized expressions of student thought. Peer narratives are understood, broadly, as activity that encompasses their “play, imagination, interests, stories, experiences, interactions and actions that underlie and ultimately may be expressed through the social tools of printed language and symbols” (Kliewer et al., 2004, p. 381). Narrative is one of the cognitive schemes that all human beings use to impose order on their encounters with the environment (Polkinghorne, 1988). Like most of us, children use their experiences within a specific classroom context to make sense of themselves and others within that setting. Any analysis then, of the ways in which students come to hold particular meanings of significant disability can hardly fail to be cognizant of the interconnectedness of the participants and the activity settings in which they are embedded. As Bruner noted, “The inseparability of character, setting and action must be deeply rooted in the nature of narrative thought” (Bruner, 1986, p. 39). These narratives of disability that emerge in classrooms derive significance and meaning only when understood as inextricably linked to the forms of practice that constitute a classroom.
Disability Studies: A New Paradigm in Education
This recognition of the centrality of the social context in the construction of meanings of disability has been an important marker of the field of disability studies, which emerged from the web of activities in the 1960s and 1970s of activists and scholars who were disabled (Pfeiffer, 2003). Within the last 2 decades, an increasing number of scholars have mounted a strong critique on professional understandings of disability that have informed educational practice thus far (e.g., Brantlinger, 2004; Danforth & Rhodes, 1997; P. M. Ferguson & Ferguson, 1995; Gallagher, 1998; Linton, 1998; Reid, 2004). Their work has implicated and questioned the epistemological foundations of the field of special education itself and the meanings of disability that it has generated. In doing thus, these scholars have shown how professionals have created a narrative of disability that has rarely incorporated the voices of other actors, including students, families, or other individuals who are disabled. Their services to students can be understood as the “restitution” narrative (Michalko, 2002) They will offer instruction in the skills that compensate for the student's deficits and restore him or her, as much as possible, to mainstream, nondisabled living. A disability studies perspective that is committed to the full participation of persons with disabilities within their communities rejects the practice of requiring students to demonstrate prerequisite skills to gain legitimate entry into the general education classroom. “Inclusion is not an educational plan to benefit disabled children. It is a model for educating all children equitably” (Linton, 1998, p. 61).
One significant influence of a disability studies approach to the education of students with significant disabilities has been the use of alternative ways for accessing and describing the experience of severe disability. Reliance on the tools of positivist research that comprised largely quantitative methodologies is being challenged by methods that may be subsumed under an interpretivist paradigm (Skrtic, 1995). The purpose of qualitative research in special education is to generate both descriptive and procedural knowledge that can lead to greater understanding of individuals with disabilities, their families, and those who work with them (Brantlinger, Jiminez, Klinger, Pugach, & Richardson, 2005). Furthermore, qualitative research seeks to understand the experience of disability from the perspective of the disabled individuals themselves, thereby generating ways to refine methods of data collection from participants who are disabled (Biklen & Moseley, 1988; P. M. Ferguson & Ferguson, 1995).
The studies of Kliewer and Biklen (2001) and Kliewer et al. (2004) offer an illustration of asking questions differently to deepen understandings of significant disability. In their research, these authors examined the opportunities for literacy development that young students with significant disabilities received and, through that process, not only described the influential roles of teacher beliefs and expectations on the cognitive development of these students but also illustrated that social interaction precedes symbolic development. In the sphere of adult services, the practice of person-centered planning echoes this recognition of embedding the individual with significant disabilities within a community of people and services (O'Brien & O'Brien, 2002). In fact, the ability of that individual to experience self-determination is premised on the capability and commitment of that community of practice to arrange those social arrangements that would ensure his/her successful participation in the community. Creating such a web of relationships ensures greater opportunity for shared identity formation with multiple social partners.
Pondering the absence of cultural narratives of severe disability, P. M. Ferguson (2003) suggested that the identities of members who are severely disabled are contingent on the narratives disseminated by others. It is in the process of interpreting the actions, and, by extension, the lives of people with significant disabilities, that people with severe disabilities are enculturated. Their identities emerge from a complex interplay of others' behaviors and the levels of participation afforded them as a result of those behaviors. Describing his son, Ian, P. M. Ferguson noted:
Other people are Ian's salvation; they are essential to the daily elaboration of who he is. Even more than for most of us, other people are a crucial part of who Ian is. Cognitive disability is not the absence of self; it is the absence of other people. (2003, p. 136)
Yet, as his writing suggests, it is not simply the presence of others that can help in unraveling the identities of individuals who are severely disabled. It is the interpretive possibilities afforded by the cultural context in which all participants are embedded that can generate those stories that will permit the individual to emerge in multifaceted ways. The individuals who are disabled within the prevalent cultural stories of severe disability, however, remain largely nonagentive, their disabilities appearing to overwhelm other dimensions of their persona.
Appropriating P. M. Ferguson's (2003) argument to the classroom context, I sought to explore how the narratives of other students in the classroom can influence the participation of classmates with significant disabilities. My research questions, therefore, were as follows: What kinds of narratives about severe disability circulate in classrooms that include one or more students with significant disabilities? What are the educational practices that contextualize those narratives? What are the effects of such narratives on the participation of all students within the setting?
This article draws on the data collected from a study that was conducted in two settings—a first-grade classroom that included “Harry” (all names used in this article are pseudonyms), a student with significant disabilities, and several general education classrooms in a high school attended by a 10th-grader with significant disabilities. Even though I found that the high school data deepened the complexity of the theory that emerged from the elementary setting, this article focuses only on Harry's story. The rich data generated by Harry's setting permitted a substantive analysis that offers new ways of understanding student relations in inclusive classrooms. Harry, who was labeled severely disabled by his teachers, is a 7-year old boy with physical and intellectual disabilities. He was also identified as visually impaired, nonverbal, and a wheelchair user who needed extensive supports for most activities at school. He was included for most of the school day in the first-grade classroom, with two 30-min sessions each day with the special education teacher in a setting that functioned largely like a resource room. He did not use any formal means of augmentative communication. He received “push-in” services from an occupational therapist, a physical therapist, and a teacher for visually impaired students and separate weekly sessions with a music therapist. A full-time paraprofessional had been assigned to him to assist in implementing his educational program.
Participant observation was conducted in Harry's school during the period of September 2005– May 2006, diminishing in intensity from 3–4 days a week (2–3 hr/day) for 3 months to once every 2 weeks (1–2 hr/day) by the end of the academic year. No formal interviews were conducted with the elementary students, though there were frequent opportunities for informal conversations during the participant observation. Interviews in this setting were conducted with the classroom teacher, special education teacher, two therapists, Harry's paraprofessional, the school principal, and Harry's mother. The mothers of five students in Harry's classroom who emerged as key informants in the study were also interviewed.
Detailed field notes were maintained throughout the study. All interviews were transcribed verbatim. Data collected through participant observations and through interviews were subject to both coding and contextualizing procedures. In analyzing the data collected from educators and families, as well as the narratives that emerged from the first graders, I applied contextualizing strategies simultaneously with coding procedures. The focus of contextualizing strategies is not to break down the data but to “locate the phenomenon in the personal biographies and social environments of the persons being studied” (Denzin, 2001, p. 79). My verbal exchanges with students as well as those occurring between students were contextualized with my field notes, teacher commentaries, as well as data from parent interviews. Every effort was made to provide “thick” descriptions (Geertz, 1973) of the setting and events so that any interpretations offered by the study would be grounded in the ways the actors— professionals, families, and students—perceived the event in question. Multiple perspectives were allowed to emerge through careful, open-ended interviews with the different players in Harry's educational experiences. Member checking occurred both during the course of the interviews and at the close of the data collection process.
Narrative Induction: A Framework for Analysis
Linde (2001) proposed the construct of narrative induction as a means of understanding how “institutions acquire new members and new members acquire a new identity” (Linde, 2001, p. 608). She described narrative induction as the process by which “people come to take on an existing set of stories as their own story” (italics in original). In doing so, Linde postulated that institutional members use a dominant or paradigmatic narrative in different ways, making the narrative relevant to themselves so that it comes to strongly shape their own course of development. Linde's argument was that identities are not fixed entities that inhere within people but are shaped by social processes. She illustrated her concept by studying the practice of agents employed by an insurance company, documenting the ways a certain institutional narrative was implemented through routine company practices and how that narrative came to assume significance in the lives of the agents. The nonparticipant narrative, someone else' story, promoted by the company came to resonate with the self-stories of the individual agents (Linde, 2001).
The construct of narrative induction was considered a useful heuristic to describe the data collected in this study. Although it permitted a nuanced understanding of the relations that existed between Harry and his peers, it also made that contingent on an examination of the nature of the educational setting. The specific forms of classroom practice that embodied the particular goals and values of this classroom collectively sustained a paradigmatic narrative that was systematically made available to its members. Members—students and staff—used that narrative to carve out their own identities and their relations with each other, expressing their unique understandings of their place within the setting and that of their coparticipants, including Harry. The process of narrative induction that could be presumed to occur in Harry's classroom is graphically explained in Figure 1.
Who Was Harry?
It was fairly evident from the beginning that Harry derived his greatest pleasure from the company of the other students in his classroom. On the days that he was alert, he would spontaneously initiate interactions with his classmates. Seated on the carpet with the others, he would lean forward, swaying somewhat unsteadily, and turning his head to bring it almost directly in front of his neighbor's face, would break out into an enthusiastic “Ahhhhhhh!”. If he happened to be in his wheelchair during this time, he was less likely to talk in this manner, though he would throw his head forward, his eyes huge behind his glasses. If Harry failed to respond to his classmates sitting around him, the paraprofessional assigned to him, Ms. Cisneros, would say knowingly that he was just bored. Therefore, if the students were not at his eye level, despite the fact that he was at their table, he might still remain disengaged from them.
Although Harry might unabashedly have shown his interest in his classmates by talking loudly to them even during times that other members in the room may have considered inappropriate, he was selective about displaying physical expressions of engagement. Certainly, Harry's response to Ms. Cisneros's voice was immediate and unmistakable. Standing over him, a little off to his right, if she spoke gently to him, he would jerk upright and turning his head almost completely to the side to gaze in her direction, he would look intently at her, his body tensed and his hands stretched out on his tray. Yet, the only person with whom he consistently initiated a physical interaction was Cristo, a Spanish-speaking student in the classroom. On more than one occasion, he was seen to slowly, but confidently, reach out his arm and place it around Cristo's shoulder. Harry clearly discriminated between different kinds of relationships in his life.
Harry's depth of participation varied depending on the setting, the activity, the other members of the setting, as well as his own physical state. In the resource room, where Harry received special education services, often with one or more students with significant disabilities, he was more restrained in his physical and vocal expressions. However, his engagement in the first-grade classroom with his peers left one in no doubt that they stimulated him to stretch himself physically, socially, and emotionally. The therapists who pushed-in their services with Harry inside the classroom did not hesitate to draw on this to entice Harry to complete some of their therapeutic exercises. They could often be found on the carpet in the center of the room in the middle of, or at least close to, a group of students whose presence, the therapists hoped, might stimulate Harry to raise his head. The strategy did not always work, but it certainly provided Harry a genuine impetus to complete the task at hand.
When participating in a collaborative math activity or in a choral recitation, Harry would use an augmentative device, the BIGmack communicator, animatedly, albeit with some prompting from Ms. Cisneros, to keep the activity progressing smoothly. Yet that animation was not always predictable. Other activities that might just as easily have induced a similarly engaged response were less successful. He might have enjoyed using a crayon on a paper affixed to a slant board during art class and vigorously manipulated his arm to create confident etchings but also remained quite unmoved when the same crayon was placed in his hand after he had arrived in the classroom in the morning.
Harry did not demand that others acknowledge his presence, even as he clearly sought their engagement. Perhaps, that was why his peers sometimes forgot him if he was not there. Ms. Hilton, his teacher, referred to this phenomenon as “out-of-sight, out-of-mind.” Harry displayed traits that Ms. Cisneros and Ms. Hilton described as being sweetly appealing and endearing. Even Mark, his classmate, pointed out that he was “never mad.” True enough, even during his moments of obvious discomfort, as when he was placed in a cross-legged position on the floor by the vision therapist, he might moan softly, but this would inevitably pass and he would return to his usual curious self. His eagerness to interact with others made it easy for his peers and other adults to engage with him and, most important, to take risks in doing so. Although some of these interactive attempts of his peers may not always have been perceived as appropriate by adults—for example, the infantilizing, high-pitched “Ha-rry” used most frequently by girls and the equally unflattering patting on the head—nevertheless, Harry received these overtures with grace and participated with interest in the creation of that social moment.
The first-grade classroom that included Harry was distinguished by a strong family spirit that was persistently cultivated by the classroom teacher, Ms. Hilton. Recognizing the importance of social–emotional development for student success in the classroom, she insisted on a code of behavior that resonated with this goal, allowing little room for violations of any kind. Her style of classroom management and her instructional practices reflected this emphasis. She was respectful in her language to students and required that they demonstrate the same with each other. She held frequent classroom conversations about community behaviors, using literature as a vehicle to communicate those ideas. Students were rarely publicly rebuked. Her way of enforcing appropriate behavior in the classroom was imparted through statements such as, “If I were you, I would. …” Another practice in the classroom that supported the family ethic included jobs that all students freely and voluntarily selected. Two of the jobs entailed being a helper for Harry and for Melissa, a student with a physical disability who used a walker.
Students were seated in small groups at tables, and almost all academic activity was collaborative in nature. Students were never formally tested or their papers scored. They were encouraged to read the books that motivated them and were not restricted to levels prescribed by district guidelines. Student participation during reading and math activities was characterized by interest and enthusiasm. Ms. Hilton's responses to inaccurate answers were never given in the form of chastisement but as suggestions to adopt a different line of thinking. Students frequently volunteered to present their written assignments to the group. The group, in turn, was charged with offering constructive criticism, whereby students offered two questions and two comments to the authors who had presented their work. Classroom celebrations to mark the end of a collective endeavor were not uncommon.
The two main story lines embraced within this family narrative were as follows: “We are the same, we are different”—despite our differences, we are really all the same—and “Being safe in our bodies and safe in our hearts”—physical and emotional security. Ms. Hilton's commitment to creating such a unified community in her classroom was not an isolated phenomenon in the building. Schoolwide practices that embraced the notion of positive behavioral supports and a strong focus on building relations with the larger community of families provided an effective backdrop for her efforts within the classroom.
Mapping Harry's Peers
As a member of this classroom, Harry undoubtedly benefited from the practices that were generated by the family focus. Students willingly and, often unhesitatingly, engaged in relations with him, seeking him out during activities that called for collaboration with a partner. As I mapped the locations of students in the classroom in relation to Harry, I was able to identify three enveloping circles in which he was embedded: the inner, outer, and periphery. These circles of relations were fluid. Except for a few who remained consistently on the periphery—at least overtly—most other students were at some moment or the other located within any of the other circles, especially the inner or the outer. Their placement in one specific circle was determined by the nature and frequency of their responses to Harry during the period of participant observation. The grouping is deliberately broad to accommodate the fluctuations inherent in the process of relationship building among children.
The inner circle
The inner circle was characterized by those who were convincingly persistent in their efforts to further their relations with Harry. Among them, Cristo, an English-language learner, stood out convincingly. Ms. Hilton speculated that Cristo might have felt comfortable with Harry because he too lacked expressive language, which enabled him to take certain risks in engaging socially with Harry. However, it was noticeably clear as the weeks wore on, that even as his proficiency in English grew, Cristo continued to display a sustained degree of involvement in Harry, clearly deriving pleasure in not just doing things for Harry but in doing things with him. The interactions of Cristo and Dominic (another boy in this inner circle) with Harry were notable because of their unquestioning acquiescence to Harry's presence in the classroom. Neither Ms. Hilton nor Ms. Cisneros, or even the mothers of these boys, reported any significant inquisitiveness on their part about Harry. They both appeared to experience a simple and uncomplicated pleasure in interacting with him. When Harry reached out to place his arm on his shoulder, Cristo responded unhesitatingly to the emotion behind the act. He too stretched out his own arm and placed it around Harry's shoulders.
Dominic's interactions with Harry, on the other hand were strongly revelatory of his own affective response rather than Harry's. His persistence in carrying out the tasks of greeting him in the morning, taking out items from his backpack, and wheeling him into the room were outside the domain of the helper role that he had selected. He seemed particularly anxious to have the opportunity to carry out those actions. On one occasion, when it was another student's turn to push Harry's wheelchair, Dominic remained inconsolable for an extended length of time. As a partner during classroom activities, Dominic was always gentle and persuasive with Harry. It is significant that Dominic and Cristo appeared to have had little need to engage in verbal exchanges with Harry. Like many other students in the class, both girls and boys, Cristo might occasionally look at him and say “Harry!” a couple of times (without the infantilizing overtones noted in others' talk), but he rarely appeared to make Harry's response to that overture a condition for his interactive encounters. Similarly, Dominic spent little time seeking a verbal response from Harry. In fact, in embracing an action-based interactive framework with Harry, both Cristo and Dominic diminished the importance of verbal exchanges as necessary to relate to him.
Among the girls, it was Gabby who also relied heavily on an action-based approach toward Harry, discovering many opportunities within the structure in the classroom to engage with him, such as reading to him or pushing his chair around the playground during recess, in addition to volunteering to be his helper. Yet, Gabby also depended less on structured opportunities as a partner, creating her own interactive moments during “free choice” times. Like Cristo and Dominic, she did not seek a particular response from Harry to sustain her own actions with him. She was also less likely to require verbal exchanges with him to do things with him. Yet, in doing for Harry, the trajectory of her association with Harry might have very different implications for him than that suggested by Cristo's and Dominic's interactions. For example, she announced with some pride to me, one day, “I stayed with Harry during PE for the whole time, because no one else wanted to!”
The outer circle
These students were somewhat less directly engaged with Harry, but their writings, artwork, comments, and questions reflected a sustained interest or preoccupation with him. One complex and somewhat puzzling story was Andrea's friendship with Harry. Andrea's relations with him were legendary in the building. Her attachment to him the previous year had resulted in a newspaper article written by her father, celebrating his daughter's relations with Harry. She was still widely considered to be his best friend. Despite this shared history, Andrea's placement in this circle, rather than the inner circle, reflected her engagement with him observed during the period of the study. Like her teacher, I had noted few direct interactions between Andrea and Harry. Ms. Hilton and Ms. Cisneros suspected that Andrea's increasing skills and widening interests accounted for her diminished attention to him. Her mother, however, had no doubt that Andrea's affection for him was unabated. She recalled the intensity with which Andrea had reacted to her decision to keep her at home because she was running a fever:
The only thing that really upset her when I told her I was going to keep her home from school was that Harry had been out for two or three days, maybe sick or on a vacation or something. But he was coming back the day that I was going to keep her home. And I mean the tears, I have never seen her so upset about something in my life, and maybe it was because she was running a fever and not feeling good. She was so upset because she had missed him you know. I don't know … just missed his company, I guess.
Despite the lessening of direct encounters with Harry, Andrea continued to write about him, wrote notes to him, and frequently sat with him in the cafeteria. Yet, it was also not uncommon to observe her standing by his wheelchair, playing idly with his hands, making silly faces at him, looking at him pensively, and then just as abruptly walking away. Furthermore, I had noticed her not participating in an activity with which many other students appeared to have grown increasingly comfortable. They would frequently raise Harry's hand during a group activity and state, “Harry wants to say something.” With Ms. Hilton's willing participation, they would proceed to state an idea, albeit in a false, high-pitched voice. Andrea had never been observed to do the same. Yet, she too ascribed agency to him like the others but in different ways. She was seen stopping by his chair and musing aloud, “Harry, how do you spell ‘name’?” My observations of Andrea, coupled with conversations with her mother and others in the building, led me to infer that, for the most part, Andrea was simply puzzled by Harry this year. Her affection for Harry might well have remained undiminished, yet she appeared to be struggling to know what to do with him. Andrea's relations with him within this setting seemed to have failed in giving her the tools to help her further her relations with him in a meaningful way.
Mark, who was labeled gifted, exemplified the student who moved rapidly between the inner and outer circles. His early persistent questioning of Harry's abilities earned him Ms. Hilton's displeasure, who saw this as a reflection of the values of individualism he had acquired from his family that countered the family narrative that she sought to establish in her room. Mark commented early in the study when invited to play a game with Harry, “He can't understand, but that's okay.” However, that did not signal the end of his sense-making process. A few months later, he remarked to the group, “So what if he can't respond, he can still laugh.” Even as Mark continued to refine his understanding of Harry, he did so in the context of repeated direct encounters with Harry, which he began to seek voluntarily. By the middle of the second semester, Mark had begun to participate in the very actions that he had questioned at the beginning of the year. As Ms. Hilton noted approvingly,
I think he has been more supportive. Like today, he was in his writing partner group, and I said to the kids “How did you feel about writing partners today? How did things go? What was your consensus, was it helpful?” And Mark raised Harry's hand and he said, “Harry gave me a great suggestion about using periods at the end of my sentences.” Which Ms. Cisneros had pointed out, but he used that so Harry could be a participant.
Other students within this circle might make Harry the subject of their writing, either in their journals or during writer's workshop. Teresa wrote a book about Harry's birthday party to which the whole class had been invited. Of the 10 pages that constituted her book, there was only one direct reference to Harry himself: “Maybe he would like my presents or not.” This was accompanied by a picture of children seated at a table, with Harry at one end. Teresa's engagement with Harry was sporadic, and she rarely sought him out to collaborate directly with him. Yet, she was also observed to declare rather flamboyantly during a group activity when Harry's name had come up, “He is very, very, very special because everybody loves him.” Like Teresa, several other students continued throughout the year to express an indirect interest in him.
Each student's response to Harry reflected a process by which they seemed to be working out a sense of their own unique selves. Some of these self-stories were not easily evident, as was illustrated by the limited engagement with Harry shown by a few students who remained on the periphery of the circles of relations that enveloped him. Among them were Melissa, a student with physical disabilities who used a walker, and Jamie. Melissa's involvement with Harry might have been an artifact of the classroom structure itself. Because she was listed as a recipient in the class list of jobs, she may not have perceived herself as a helper for Harry and therefore not requested it. Yet, Melissa had begun by the end of the year to reach out to Harry and read to him. Jamie, however, staunchly declined till the end of the year to volunteer to be Harry's helper. He did not choose to work collaboratively with him either. Yet, it was no less clear that despite his studious avoidance of Harry, he was still engaged in making sense of him. He demonstrated this as we sat in the cafeteria one day, nibbling absentmindedly on our lunches. Hannah, seated behind me was calling out softly to Harry. As I smiled encouragingly at her, Jamie commented directly to me:
“Harry is not going to hear her. She is not loud enough.”
I said, “Really, you think so?”
He nodded, turned in the direction of Harry and without warning barked a loud “Harry!” Almost instantly, Harry's head jerked up noticeably. Jamie faced me again and said meaningfully, “See?”
Despite the opportunities afforded by this classroom to engage with Harry, for some students like Jamie, the family structure still could not empower them to take certain kinds of risks, in this case, interacting with Harry.
Harry participated in the development of those individual self-stories in different ways. It was not a coincidence that he carried out the agentive and purposeful act to embrace Cristo and nobody else. Cristo and Dominic emerged as the key figures in a group of boys who clustered around Harry at different times, especially when collected on the carpet or occasionally in the cafeteria. As Harry sat at the lunch table, flanked on either side by the boys, he repeatedly and confidently reached out to touch their shoulders. Mrs. Cisneros was convinced that these were his best friends. Harry also reacted with enthusiasm to Andrea—his body would stiffen and he would reach forward with his whole upper body, clearly demonstrating a readiness to participate in an encounter with her—but when she walked away after playing aimlessly with his hands, he seemed to gaze uncertainly after her. Many other girls had a similarly limited repertoire of ways to engage with Harry. They played gently with his hands, cooing with pleasure under their breaths, and Harry simply responded by swiping back at their proffered hands. Teresa's actions might have left him equally nonplussed. On several occasions I had noted her swaying and giggling in front of Harry (always in the presence of other girls) and chanting “Harry! Harry!” Even though it was not overtly disrespectful or mocking, her actions also lacked any real purposefulness. Harry remained alert, but did not initiate any particular response.
The Family Paradigmatic Narrative: Hidden Norms
The family emphasis within the room was articulated in Ms. Hilton's curricular choices, instructional practices, and style of classroom management. To the extent that this family focus propelled Harry into activities that offered opportunities for engaging in relations with multiple social partners, he was well served by this institutional narrative. These opportunities may not have been conceivable in other more restricted settings. However, the willing, even determined, embrace of differences within this particular family narrative continued to be intertwined with an unproblematic acquiescence to a normative framework that postulated some actions/behaviors as more desirable than others. These forms of practice prescribed Harry's participation in ways that constrained his ability to express himself.
The “shhh” story: prescribing normative behaviors
One scenario where the attachment to the normative narrative was repeatedly evident was what I refer to as the “shhh” story. It was no secret that Harry's loud talk, communicated through an extended and animated “Ahhhh” delivered into the face of the addressee, expressed his pleasure at social interaction. It was also not uncommon for him to do so in the middle of whole-group instruction as students collected on the carpet at the feet of the teacher. Ms. Hilton's response during those moments was always consistent. She did not respond to it, but largely ignored it and continued her instruction. Students responded in one of two ways. They, too, might ignore it or barely pay any attention to it. Or, they might, turn to him and, mimicking both the facial expression and tones of a teacher, firmly say “shhh,” simultaneously placing a finger on their lips. Harry's responses varied. Sometimes he stopped talking, and at other times he seemed prompted to do more. Usually, however, it did not continue to the point where Ms. Hilton had to intervene. Or, perhaps Ms. Hilton's intervention was preempted by the actions of Ms. Cisneros, who would pull him back from the group.
Ms. Cisneros, Ms. Hilton, and, not surprisingly, the students, tacitly upheld the normative assumption that if Harry was to be a member in this classroom, he must necessarily conform to the rules of acceptable student behavior. Abstinence from talk when the teacher held the floor was the primary foundation for building appropriate student participation in the classroom. Harry's disregard for this rule, however explicable, needed a response that upheld that rule. Ms. Hilton was released from this responsibility because Ms. Cisneros's concern embraced not only Harry but the other students as well. In the absence of any other direction, Ms. Cisneros assumed that placing their educational needs before Harry's need to be socially acknowledged was the acceptable thing to do. In unquestioningly accepting her decision, Ms. Hilton upheld the primacy of that assumption.
Configuring Harry's academic learning
Ms. Hilton's commitment to underlining Harry's membership in the classroom did not easily resolve the presumed disparity in cognitive levels between Harry and his classmates. She acknowledged the difficulty of identifying meaningful activities for Harry within the room, but the meaningfulness was determined by the academic nature of the activity. She stated,
I think with Harry, the biggest challenge is mainly that cognitively he is on such a different level. And so trying to adapt things that we are doing … it's almost a replaced curriculum and not a modified [one]. And so at times [it] can be challenging to try and think back to something that I would have planned for maybe a preschool classroom or something.
This approach led to few avenues for Harry to participate in the classroom besides unstructured occasions when content area goals were not crucial. On several occasions, as the rest of the group worked independently in math or reading, Ms. Cisneros was observed to place him in his stander and encourage him to walk to the sink, which she had filled with sudsy water. So, Harry would stand, his back turned to the classroom, his hands immersed in the water, glancing down at the foam, and not talking as loudly as he had been noted to do on other occasions. Given such a conceptualization of his membership, Ms. Hilton could describe his mother's desire for him to remain included at the same level during the forthcoming academic year as being “unrealistic.”
Ms. Hilton did acknowledge the wide differences that were inevitable within any classroom and her anxiety to meet the needs of all students, even those who had not been “diagnosed” with a disability. However, she also seemed to suggest that Harry's “diagnosed” needs appeared to fall outside the pale of normal differences that could be expected in any classroom. So, from her perspective, the disconnect between Harry's cognitive level and the increasingly academic nature of the subsequent grades precluded the possibility that the general education environment could offer him real benefits. It was also evident that resolving this division would require too much change on the part of the general classroom to make it a “realistic” option. It was not surprising to learn by the end of the study that the school had decided during the forthcoming academic year to limit Harry's participation in the general education classroom to the afternoon sessions only (when a significant portion of the time was devoted to specials like art or physical education). During the mornings, Harry and several other students with significant disabilities in the building would receive instruction from the special education staff.
The special education piece: reinforcing norms
Even as Harry may have been accepted as a member of this classroom, his participation continued to draw heavily on the special education narrative that claimed responsibility for a significant portion of his educational programming. For Ms. Hanson, the special education teacher assigned to Harry, participation for her students centered on the development of skills that would enable them to be successful within the “normal” environment. The pace of the general education environment might hinder the acquisition of those functional skills that might be more easily accomplished in a self-contained setting, but it also provided those opportunities to enhance other skills, mostly social, that were unavailable in the other. In other words, it seemed that as long as it was the normative framework that defined the curriculum for students with significant disabilities, it really did not matter where the education was delivered. The activities might differ, but the premise underlying the selection of tasks did not. Harry was required to develop the skills that would place him somewhere along the spectrum of “useful” living.
So, projecting “down the road” (Ms. Hanson used this phrase nine times during the course of a single 45-min interview), it seemed consistent to plan currently for functional activities such as watering plants, feeding the fish, or helping with the dusting, activities with which Harry might be involved either at home or in the classroom. True enough, well into the study, Harry began to visit other classes in the kindergarten–first grade-wing of the building to collect recyclable cans. This would also give him the opportunity to use his switch purposefully. Operating within this usefulness framework, it was not surprising that the scenario conjured up by Ms. Hanson for Harry “down the road” to justify her rationale for emphasizing certain activities involved “counting pills.”
Because I guess in my mind I am always thinking, should something happen to Mom and Dad, and he can't advocate for himself, we want him to at least be able to count, you know, one, two, …, two pills. Things like that [which] he'd be able to maybe communicate with somebody down the road. You know, “That's the pill I take, two pills” … or something like that.
The normative assumptions that informed her thinking about Harry obscured the possibilities for his future that could counter the assumptions of dependence, even custodialism, accepted within this framework. It was not illogical for her to presume then that the only significant life partners for Harry could be his parents.
Ms. Hanson (and her special education colleagues in this building) welcomed the community-building efforts of the school to include students with significant disabilities, but in their unproblematic acquiescence to the normative assumptions inherent in those efforts, they not only accepted the primacy of those values but rendered their incompatibility with community and family goals invisible. The special education story in this building served to intensify the normative component of the paradigmatic family narrative. It was not surprising, then, that although teachers and parents both reveled in the successes that they perceived in the current efforts to include Harry, all of them anticipated a sharp decline as Harry and his peers grew older. The principal of the building noted ruefully,
It has been sad for me to see, I watch on the playground, you know, I have had conversations … In the primary grades, it's like they embrace it, they all want to help Harry, they all want to help Melissa. They want to be around, but when they get to that age when it's fourth, fifth grade, the peer thing starts happening and …, I don't know, it just starts changing.
The practice and relations of helping
In ensuring that Harry, and Melissa, were required to assume classroom jobs like all other students, Ms. Hilton was faithful to the plot structure of “we are the same, we are different” storyline. Yet, Harry and Melissa were the only students who were themselves jobs for the other students. It was certainly noteworthy that not until toward the end of the year was it necessary for Ms. Hilton to assign a student to either Melissa or Harry. There was no dearth of students who volunteered for these positions. However, unlike anyone else, it was Melissa and Harry who remained vulnerable to the whims of other students in determining, to a significant extent, their school experiences for that week.
Understanding the process of assistance as a job created a unique framework from which to understand both Harry and other students. It prompted Ms. Cisneros to characterize students as “conscientious” when they executed their jobs with enthusiasm and commitment. This commitment was exemplified not only in simply carrying out the requirements of the role—pushing his wheelchair— but in placing his needs above one's own. Therefore, Maddie and Jeremy deserved praise for staying with Harry throughout recess, even though this was not called for by the job description. Not only was Harry (as was Melissa, possibly) firmly situated in this framework as requiring help, such help brought the other student a heightened social standing within the community. (Maddie even received a Shining Star—a schoolwide student incentive program—for her committed effort). Within this perspective, there was little room for Harry to be viewed as having the capacity to help others. Although helping was an integral component to the family narrative instantiated in Ms. Hilton's classroom, it fostered a hierarchical set of relations that limited Harry's ability to define the ways he could be understood by others.
Implications of This Paradigmatic Narrative for Harry
Limits to participation
Even though Harry's teachers might conceive of his academic and social participation as separate strands of experience within the classroom, it is equally indisputable that their practices were not informed by current research in making the general education curriculum accessible to students with significant disabilities (Ryndak & Billingsley, 2004). Aligning individual student goals with educational outcomes for all students has received increasing attention in the literature in the last decade (Clayton, Burdge, Denham, Kleinert, & Kearns, 2006; Cushing et al., 2005, Jorgensen, 1997). Neither Ms. Hilton nor the special education teacher appeared to be familiar with these developments. Consequently, Harry's participation was itself prescribed by the limited kinds of activities designed for, and expected of, him. If the only occasions when Harry could participate meaningfully with students were during “free choice” time, he would have fewer opportunities to express his learning in multi-faceted ways. Further, the special education teacher's strong concern for Harry to develop functional skills would necessarily draw him further and further away from his peers as he traveled between classrooms to collect recyclable cans or watered the plants in the building. Such a restrictive conception of functionality not only obscured the importance of embedding Harry in a community, it forced educators to conjure up futuristic scenarios for him that were at best unsupported or at worst stereotypical (D. L. Ferguson, 1987).
The artificial separation of academic and social development made Harry's placement in the general education setting vulnerable to professional assessment of his abilities to remain connected, academically and socially, to his peers. In other words, as the complexity of content area knowledge increased, Harry was perceived as even more severely disabled. This was accompanied by a resignation to the inevitable decline in relations between Harry and his peers as they grew older. Together, these appeared to provide an impenetrable rationale for limiting his participation in general education settings.
Mixed benefits of peer relations for Harry
Although Harry would certainly have benefited from more informed ways of including him in the activities in the classroom, what can we learn from the individual tales of Cristo, Andrea, and others that were described earlier? It was apparent that as students used the larger family narrative to explore relations with him in different ways, they were simultaneously carving out their own identities. When Gabby announced in the middle of writer's workshop, “I didn't think I was going to like working with him, but now I really do,” it was as much about giving voice to her evolving self as it was about Harry. An argument could also be made that Mark's perceived transformation was as much about his own struggle to achieve membership in this classroom as it was about extending the same to Harry. The apparent contradictions in Andrea's relationship with Harry suggested her struggle to make sense of him as well. The opportunities for shared experiences with Harry in this classroom highlighted those complex stories even as they offered scope for them to evolve continually. Clearly, if students were making sense of themselves and each other within the context of a larger paradigmatic narrative, they benefited from the family structure within this room.
A closer look at their relations, however, suggests that some of those relations as they existed at the time of the study might not always have been empowering for Harry. As described earlier, it was in the context of some relations, such as with Cristo, that Harry could take the risks that permitted him to express himself. However, Gabby's pride in being the one to stand next to Harry for the whole period because no one else wanted to, portended an understanding of Harry as the perpetual care recipient. When Andrea made silly faces at him or played idly with his hands, they were both disempowered. The infantilizing “Ha-rry!” of many of his peers offered little room for Harry to respond meaningfully. Though the normative influences within the family narrative described in the preceding section arranged the scope and quality of many of those relations, students also received little direction from the teachers in negotiating their relations with him. They were encouraged to utilize the available framework to construct their own understanding of him. In the absence of more systematic mediation, diminished student interaction with Harry might well be perceived as symptomatic of a widening gulf in skills and interests, leading to a predictable dissolution of relations.
Building Harry's Future: Scaffolding Student Self-Stories
In what ways could students be assisted in furthering their understanding of Harry? Community-building activities that are more vigilant about norms and supported by general education practices, such as differentiated instruction and universal design, can offer an accommodative framework to deepen understanding of all students. Such practices would allow greater scope for Harry to enter the mainstream life of the classroom. However, Andrea's case also offers a stark reminder that, although offering students the structure to adopt an action-based approach to building relations with Harry is important, students also require scaffolding in their immediate relations with him. One way that Andrea and the other students could be scaffolded to greater levels of understanding of Harry might be through the deliberate use of interpretations. Ms. Hilton could model such interpretive thinking in her conversations with him and about him in the classroom, emphasizing the unique semantic structure of such statements (“I think that Harry is …” or “Harry might be …” or “I wonder if Harry is …”). In doing this, she would demonstrate the validity of subjective information and, by offering opportunities for Harry's peers to make similar connections, acknowledge and legitimize their roles as interpreters of his text. Such “narrativizing” practice might bring Andrea closer to the project of “knowing” Harry, even as it transformed the ways Cristo, Dominic, and Gabby engaged in practice with him.
In the absence of an infrastructure that encouraged and legitimized such interpretive activity on their part, the kernels of new and varied narratives of significant disability offered by Harry's peers might easily be superseded by adult and/or professional understandings of disability. Nurturing those emergent meanings is particularly significant when considering the goal of enabling students to remain engaged with him when they were no longer involved in routine activities with him. The data from this study suggest a strong need to pursue inquiry into the role of educators in not just facilitating student relations but actively scaffolding them to generate new meanings of disability. Such mediation might assist all students to exist in mutually empowering relations that could, in turn, transform the nature of the community in which they were embedded.
I would like to acknowledge Phil Ferguson, Dianne Ferguson, and Scot Danforth for their support and guidance throughout the research process and their valuable suggestions in the preparation of this manuscript.
Author: Srikala Naraian, PhD, Assistant Professor, Department of Curriculum and Teaching, Columbia University, Box 31, 525 W. 120th St., New York, NY 10027. email@example.com