Life in Inclusive Classrooms: Storytelling with Disability Studies in Education

I [Don’t] Belong Here: Narrating Inclusion at the Exclusion of Others

Emily Clark

People use narrating to interact in the world, to figure out what is going on in their environments, how they fit, and sometimes, how to change things…
(Daiute, Todorova, & Kovács-Cerović, 2015, p.3)

“Miss, I don’t belong here.” I hear this statement over and over again from my students who attend a self-contained special education high school in New York City. Many of them have been kicked out or pushed out of other schools—private, public, and charter—for a variety of “official reasons.” When I hear them tell the stories of their educational journeys, it is clear that the opportunities of inclusive education are available to some at the exclusion of others. 

As a doctoral student I tend to refer to my high school students as the primary motivation for my research. While this is true, the foundation of my work lies in my family’s journey to help my younger brother and sister through school and life. I have kept the story of my siblings close to my chest, perhaps believing that academic ways of knowing should be separate from personal experience.

In Being Bad: My Baby Brother and the School-to-Prison Pipeline (2014), Crystal T. Laura offers readers a glimpse into the world of layered identities not often captured in traditional academic writing. She writes about her brother as a way to examine structures that seem to ensure that young men of color wind up in the carceral sphere. As Laura (2014) points out,

academics have a hard time dealing with the place of intimacy, closeness, and relationships in scholarly work. Even in education, which is so fundamentally driven by what people believe, feel and do, stories—simple, singular stories about these things—are often underprivileged forms of insight. (pp. 92-93) 

Laura’s work enabled me to more clearly define my own connection between narrative and scholarship. Privileging the stories of my students and my siblings has allowed me the scholarly space to see the “hinges in the text” of inclusive education (Danforth & Rhodes, 1997, p. 360). 

Legacies of Exclusion

An examination of contemporary experiences of inclusion and exclusion within the public education system would be incomplete without a brief exploration of some elements of what Danforth (2014) characterizes as “essential to our cultural understanding of what a real school is” (p. 9). These elements include the standardization and bureaucratization of schooling that began in the 1800s and shape our classrooms today (Kaestle, 1983; Tyack, 1974). 

Embedded in the history of schooling in the United States is a history of exclusion—a history that brings into sharp focus a system not designed for everyone. The stories shared by my students and siblings highlight the legacies of exclusion that continue to exist today.  

Regardless of our own experiences or how reform movements (e.g., Common Core, EdTPA, Danielson) have shifted actual classroom practice, an exceedingly narrow conception of what classrooms should look like and how “good students” should behave continues to make its way into our collective conscience: chairs and desks in rows, the teacher at the front of the room, all students sitting quietly following the teacher’s instructions.

Tyack and Cuban (1995) refer to this as the “grammar of schooling” (p. 85).   Students who challenge this “grammar” through learning differences, behavioral differences, cultural differences, language, or virtually any other difference can find themselves pushed out, labeled, and/or separated from their peers (Deschenes, Cuban, & Tyack, 2001). Those students with dis/abilities who adapt or learn the “grammar” are included, but often with reservations. As Gallagher (2010) points out,

genuine belonging becomes nearly impossible and all that remains is the prospect of “including” students who will undoubtedly be viewed as, for want of any other term, artificial transplants whose ersatz presence in the general education classroom will inevitably be subject to abiding doubts about their assimilative adequacy. (p. 36)  

Legal challenges for and against the inclusion of students with dis/abilities in school are a significant part of the history of the public education. Compulsory education laws enacted state-by-state starting in the mid-1600s to 1918 were not enough to secure the right to an education for all students (Katz, 1976). As Yell, Rogers, & Rogers (1998) detail, the legal victories toward inclusion of students with dis/abilities in the public education system would not have been possible without the landmark case, Brown v. Board of Education

Lawsuits brought on by families and advocacy organizations would inform creation of the legislation known as the Education for All Handicapped Children Act (EAHCA), which was passed in 1975 and is now known as the Individuals with Disabilities Education Act (IDEA). This legislation led to what Slee (2011) describes as “an uneasy alliance between the radical compromise of parents of disabled children demanding some form of education for their rejected children, eugenics imperatives and dominant expert psychological and medical knowledge about disabled children” (p. 12). While EAHCA mandated and provided for the funding of education for students with dis/abilities it also solidified the use of the medical model as the approach for identifying, assessing, labeling, and educating students according to their dis/ability related needs.

The launch of the movement towards inclusive schooling is often attributed to Madeleine Will, Assistant Secretary for the office of Special Education and Rehabilitative Services, US Department of Education, in 1986  (Will, 1986). In a speech, Will (1986) states, “special programs and regular education programs must be allowed to collectively contribute skills and resources to carry out individualized education plans based on individualized education needs” (p. 413). Prior to the speech Special Education was largely conducted in segregated classrooms. As Danforth (2014) says,

In the United States, disability and exclusion go together like inhalation and exhalation. Forcibly housing a disabled young person in a hospital or residential facility secluded from the general community, or providing schooling in a classroom or school that allows no contact with nondisabled young people seems completely reasonable. (p. 37) 

The push for educational inclusion was (and is) a social justice movement in response to the segregation of students with dis/abilities from general education classrooms. However the implementation of inclusive education has resulted in a large degree of confusion, and results have been mixed at best. 

Our Table Grows

I was ten when Maria and Isaac became a part of our family, when as my older sister, J. Elizabeth Clark (1997) writes, “we would grow from four to six and keep the extra leaf in the table” (p. 24). Born to parents who were substance (ab)users and positive for the Human Immunodeficiency Virus (HIV), Maria and Isaac were bound to face incomprehensible challenges.

According to Levine (1995), “Most orphaned youngsters are not HIV-infected but are at high risk for a range of behavioural and developmental problems, as well as for engaging in high-risk behaviours associated with HIV transmission” (para. 2). But in the 1980s, people were not talking about the life outcomes of children orphaned by Acquired Immunodeficiency Syndrome (AIDS) in the United States. The US government did not even keep statistics of how many children were orphaned by AIDS (Norwood, 2009, para. 3). The educational system was not and still is not equipped to embrace the complex emotional and learning needs of students such as Maria and Isaac, who—in addition to academic needs—required emotional support for personal trauma.

Our parents did not have any experience with the special education system and learned the process as they went along. This was long before we could use the Internet to answer our questions. Schools were the primary source of information for understanding Maria and Isaac’s learning differences and for navigating the special education system, which they entered as the movement towards inclusive education was gaining ground. The educational experiences of my siblings were directly impacted by the confusion of inclusion.

Our Maria

From my spot on the big branch of the tree I see the white 15-passenger van pull up to the front of our house. My mom walks out to meet Maria, age two, who is being dropped off from school. I watch the driver help Maria out of her seat. Her slack mouth hangs open and drool soaks her shirt to the skin, creating a rash on her chest and face. Her bright red hair is pulled up into a fountain on top of her head. As my mother picks her up, Maria’s eyes brighten with recognition.

Maria does not talk or make many sounds – not even when she cries – so we watch her facial gestures and body language for clues to understand her needs and feelings. I jump out of the tree as my mom takes her inside and straight up to the bathtub. Maria sits in the tub, sometimes splashing the water, but ignoring the tub toys. My mom talks and sings to her as she washes her, dries her, puts on a clean diaper and clothes.

Maria is no longer drooling and is interacting with my mom by pointing at different things in the bedroom. By dinnertime Maria is bright-eyed and using babbling noises to communicate.

Maria started her educational career in a completely segregated United Cerebral Palsy (UCP) early intervention program. Even though Maria did not have cerebral palsy her social worker felt that this program would be a good place for her to learn, among other things, to navigate stairs without assistance or throw a ball. In our city, this well-resourced program was the best option for Maria until she was placed in an inclusion classroom during elementary school. There, she was included as long as she remained compliant and passive. As she got older and entered high school her differences became more apparent. Most days she was “kept” in the resource room, where the emphasis was on “life skills” like hygiene and learning how to use a microwave. My mother, Gloria Clark (2004), describes our family’s experiences this way:

[P]arents and a team of teachers sit down together and write up new and continuing educational goals for each child every spring. Bureaucratically, this takes care of individual needs, but the reality behind the paperwork is, at least in my experience, an inflexible, narrow philosophy that the only thing these children can learn to be are low-income workers. Our Maria, of Degas and the pink crayons…stuffs envelopes and folds laundry in school. She is checked every day to see if she has taken a shower and put on deodorant. She is denied poetry, science, music, history, and art. Her field trips are to Wal-Mart to go shopping…Her voice is not heard. (p. 223) 

My mother’s recollection of these experiences is in direct alignment with Calderón-Almendros and Ruiz-Román (2014), who state that

little attention has been given to people with disabilities from the point of view of educational inequalities…. It is assumed that they obtain the academic results that they should obtain, and the social fate that this earns them…. [I]n the same way as the school legitimizes, sustains and strengthens the stratification based on social class, it also generates mechanisms that lead people with disabilities into poverty, exclusion and social devaluation. (p. 253)

Maria, now almost thirty, remembers school as “being fun but also I was irritated that I wasn’t allowed to be with other kids.” She sees having been segregated from her peers as missed opportunities for “making new friends and helping people out” (personal communication, January 15, 2016). She was included in the high school chorus and home economics programs, and she had a “buddy,” a “typically developing peer” (i.e., a child without disabilities), who ate lunch with her in the cafeteria. But Maria recalls, “I was frustrated by [my teacher] when I wanted to go to chorus.” 

Her special education teacher did not want her to miss “morning meeting” during which hygiene check took place (personal communication, March 22, 2015).  My mother (Clark, 2004) notes, “I am fascinated by the fact that the resistance has not come from the regular education teachers, but from the special education teachers” (p. 223). From my parents’ perspective,  the school seemed more concerned with following the curricula than meeting Maria’s needs. Still, Maria’s educational experiences are a lot easier to explain than Isaac’s. While Maria’s experience was not a satisfactory model of inclusive education by any means, Isaac’s was a complete disaster. 

Isaac and Righteous Rage

My mother's voice is tired and I hear the waves of frustration ebb through our phone conversation as we talk about my brother. I am curled up on a desk chair, wedged into the telephone nook in the common space of my dorm, five hundred miles from home. I hear the familiar creak of the rocking chair as my mother rocks back and forth telling me of the latest fiasco.

That morning she had packed Isaac a special lunch and made sure that he was wearing a green shirt that would identify him as a part of the “green gator” team for a school field trip, a visit to a local historical site, and then a picnic at a park. Isaac had been talking excitedly about it for days.

At dinner that evening my parents asked Isaac about the trip and he said, “I didn't go. My teacher said that I am not allowed to go on field trips because I have to stay in the inclusion room.”

My mom talks about how Isaac had been struggling both at home and at school. His teacher had called to report that Isaac was banging his head on the desk at Math time and had taken to walking out of the classroom. “His teachers just don't know what to do with him and to be honest, sometimes your Dad and I aren't sure either.”

My brother was in an inclusive Head Start program. His early schooling experiences were the opposite of Maria’s in that he was included in classes with his typically developing peers. He was allowed to struggle in early elementary grades and his teachers attributed most of his delays to developmental issues. Whenever my parents questioned Isaac’s progress or struggles in school, his teachers would say that he was just mischievous or that he needed to mature and he would be fine.

By the second grade it was clear that Isaac was not learning at the rate of his peers. He was unable to identify his colors, numbers and letters. I can remember one night we cut numbers out of construction paper and taped them everywhere. Isaac was encouraged to trace and say the name of the number every time he saw one. A blue number two remained taped to the toilet until we moved a year later. 

By the time my brother reached middle school he was completely isolated in a self-contained setting, though it was called an “inclusion class.” Although my parents advocated for the inclusion of my siblings in general education classes, Isaac’s behavior often made it difficult for them to argue with his school about this placement. Isaac could be argumentative and confrontational and he struggled in all academic areas. His middle school experiences in the “inclusion room” looked exactly like what Slee (2011) describes:

In many instances the application of the term “inclusive education” is imprecise and misleading. I have encountered schools with an inclusion room. This is a room where difficult, disruptive, and disabled students are gathered so that we can say they remain part of the mainstream school. (p. 156)

My father shares this story about the school system’s failure to meet Isaac’s needs:

He was starting first grade and I went to the school to meet with his teacher. This was Isaac’s second time in the first grade and I thought there were some things she should know about him. She wouldn’t listen to what I had to say, and she wouldn’t take the reports that I brought with me. She said that she preferred to meet him and figure him out. At the end of the school year she sent home a note apologizing for not listening. (personal communication, December 20, 2015)

Every year it would be the same thing. Initially, all his teachers saw was this little blue-eyed, curly-haired kid whom they thought they could “fix” or “save.” By October of every year, Isaac would be relegated to the “resource room,” the principal’s office, and later the “inclusion class.” As Mitchell and Snyder (2000) state, “If inclusion is a reluctant social experiment, then retreating when challenges arise is understandable” (p.3). 

The challenges that Isaac presented were innumerable. My parents believe the situation fell apart with the school’s dismissal of my parents’ own knowledge of Isaac.  At one point they begged his middle school to provide anger management for Isaac, as he needed to find constructive ways to deal with his anger. The school denied their requests and instead suspended him for his behavior. All the way through high school Isaac struggled to find a place—and he is still struggling. Though he graduated, he rejected vocational support from the school district, which meant that he was on his own to find a job. Since then he has been hospitalized and incarcerated. He is now unemployed but receiving disability, stuck in a system that he rejects and yet cannot escape.    

In and Out

As Maria and Isaac got older and their learning differences and personalities became more pronounced, their paths would switch from inclusion to self-contained and back again. Both were placed in some inclusion classes at the insistence of my parents, but neither fully benefited from the promise of inclusion.

In 1992, Colin Barnes published a study in which he identified ten stereotypes used in media to portray people with dis/abilities. I believe that throughout their schooling these same stereotypes were applied to Maria and Isaac by their teachers and school administrators. Maria fell into the “disabled person as pitiable or pathetic” (p. 7) and Isaac fell into the category of “his/her own worst enemy” (p. 14). Although Maria remembers times in which she was not allowed to leave "the resource room,” she was viewed as “pitiable or pathetic” by her teachers, and was able to be partially included with her typically developing peers because she posed no behavioral disruptions or challenges to the class.

To this day Maria continues to be mostly included. Through community work placement she volunteers at a nursery school and at a local animal shelter, though there have been times when she was asked not to return to her placement because she posed “too much of a challenge” or required “too much direction.” She still lives with my parents and goes with them to philharmonic concerts, academic conferences, and even participates in Revolutionary War reenactment. 

Isaac on the other hand was treated as though he was “his own worst enemy.” Because Isaac’s dis/abilities do not fall neatly into one of the Individuals with Disabilities Education Act (IDEA)’s thirteen dis/ability categories, many of his teachers and others involved in his education blamed him for his educational and personal struggles (U.S. Congress, 2004).  He was segregated from his peers because he posed behavioral challenges and needed a lot of academic support from teachers.

Isaac says that “if somebody paid attention and would have worked with me I wouldn’t have been so angry and frustrated” (personal communication, March 6, 2016).  His behavior was unpredictable, ranging from offering to help the teacher with a task, to banging his head on the desk, to making “terroristic threats.” His experiences of being frequently disciplined by teachers and administrators led to what Ramey (2015) terms “criminalized school discipline” (p. 182). Ramey (2015) adds, “For children who display severe behavior problems, repeated involvement with criminalized forms of school discipline at early ages creates the perception among teachers and peers that these children are repeat offenders destined for involvement in the criminal justice system” (p. 183). 

I remember Isaac begging my parents to be sent to military school. By the age of twelve he embodied the belief that he was a bad kid and that he needed discipline in order to be successful. 

Isaac has always had a lot of anger, but not without reason. His anger with his history is justified. His anger with the system is justified. While the justifications for his anger are not excuses for violent outbursts, they are a perfect example of what Duncan-Andrade (2009) has termed “righteous rage” (p.9).

Still Unsafe for Righteous Rage 

Maria and Isaac graduated from high school almost fifteen years ago, and yet the state of inclusive education has not changed. Some students, like Maria, get the experience of some education alongside her typically developing peers, while others, like Isaac, are criminalized and excluded. Sadly, the increase in accountability measures that attach student test scores to teacher evaluation and school funding, combined with zero tolerance policies mean that students are being pushed out in vast numbers (Advancement Project, 2010; Fabricant & Fine, 2013; Darling-Hammond, 2006). 

In New York City, high school students, some of whom have been labeled with a dis/ability and others who challenge the “grammar” of schooling because of cultural, behavioral, learning, language, or other differences find themselves pushed out and left with few options.  

The self-contained special education high school where I teach in New York City has year-round enrollment and accepts students with IEPs. The students are generally classified as “Emotionally Disturbed” or “Learning Disabled” and have been thrust out of their community, private, charter, or other special education settings for behavioral and/or academic reasons. In addition, some of our students are transitioning back into the community from hospital or juvenile detention facilities.

After being enrolled in our program, the dance towards general education (gen ed) begins. The carrot of inclusion is dangled in conversations with students in IEP meetings: “If you behave and earn your credits, you will show us that you are ready to go to gen ed.” This conversation sets me on edge every time it takes place because many of my students are taught to think of inclusion in general education programs as a privilege and not as a right—or more commonly—that their current school setting is a punishment. 

A few years ago, I had a student who attended some of his classes at a nearby community school as a part of an inclusion program. He wound up in handcuffs because the principal would not give him his phone at the end of the school day. Having to wait to get your phone back may seem inconvenient but not worth getting arrested. But for this young man, his phone was his lifeline. He did not have a stable home and was spending his nights on couches and floors of friends and distant relatives. His phone was the only way that people could find him. The principal viewed him as a student with a history of behavioral issues. She treated him with little care other than to have him managed by school safety agents outside of her office.

As a result of this incident, the student wound up being hospitalized and then sent back into a full-time special education setting. The reason he had been moved into the inclusion program was because he did what he had been told he needed to do—he earned his credits and followed the behavioral rules.

As Connor and Ferri (2007) state, “It is absurd to plan inclusion of students with significant disabilities in overcrowded classrooms where the teacher [and administration] has received no more than a crash course in special education” (p. 72). My feeling is that not only is it absurd; it leads us directly to the school-to-prison “nexus” (Meiners, 2007).

This young man, with whom I stay in touch, continues to struggle to fit in. Like Isaac, he is in and out of hospitals and shelters, just trying to find his place. I cannot help but wonder what might have been different had he been truly included and supported by a program that was meant to engage his academic and emotional needs.

Critical Hope

Where does this leave us? While I believe that the social justice-oriented intention of the inclusive schools movement is well-meaning, issues of structural inequity must be addressed by both educational researchers and classroom teachers. Smith (2015) wonders, “What if a goal of inclusion—across oppressions and identities—is not a useful trajectory for this thing we call education?” (p. 51).

As has been well documented, the disproportionate representation of students of color in special education continues to be “the miner’s canary” in education research and policy development (Waitoller, Artiles, & Cheney, 2010).  This analogy suggests that students of color (like the canary) are unable to survive and thrive in the current conditions of the public education system.  Educational research has focused on the achievement gap as the major cause for this dynamic.  Gloria Ladson-Billings (2006) reframes the concept of this “gap” as an “education debt” (p. 3). By continuing to concentrate on the development of interventions and programs to close the achievement gap, she posits, researchers are reinforcing the structures that maintain educational inequity.  One reason for this is that research on the achievement gap is largely dependent upon examinations of scores on racially biased standardized tests

As Patel (2016) states, “The system is, in many ways, doing exactly what it is designed to do, which is segment land, people, and relationships among them into strata. When educational research focuses on these strata without addressing the societal design that creates the strata, it becomes complicit in the larger project” (p. 18). To me, this means there should be a shift in the focus of educational research from targeted interventions with specific populations to research that aims to reconsider the structure, shape, and scope of education for all students.   

In addressing the more immediate needs of students and classroom teachers, Jeff Duncan-Andrade (2009) puts forth the idea of “critical hope” as a solution to educational inequity (p. 5). Drawing from the work of Cornel West, Duncan-Andrade names three elements of critical hope that “must operate holistically and, in fact are mutually constitutive” (p. 5). The three elements of critical hope are “material, Socratic, and audacious” (p. 5).  Duncan-Andrade challenges the approach of educators who

try to create classroom spaces that are safe from righteous rage, or worse, we  design plans to weed out children who display it. The question we should be grappling with is not how to manage students with these emotions, but how to help students channel them. (p. 9)

It is in this way of thinking about students who find themselves at the margins of education that I find hope in the classroom. If Isaac and many of my high school students had had schooling experiences that engaged their differences, anger, frustration, energy, or other ways of learning in constructive and empowering ways, their experiences would have been different. Instead of being kicked out for banging his head on his desk, Isaac might have had a teacher who recognized his frustration and worked with him to figure things out. If the principal had spent some time getting to know my student she might have used a different approach with him regarding his cell phone. In the same way, teachers, rather than viewing students who are challenging their structure, assignments, and rules as disruptive, might consider that these students are calling attention to structural inequities within their pedagogy.