In this narrative essay I describe the process and outcomes of a group of fourth graders' engagement in a critical inquiry into the constructed meaning of disability in society. Through self-directed and guided learning, these students examined the historical roots of disability oppression and deconstructed ableist assumptions, and thus found their own understanding about community membership to be transformed. Positioning the need to infuse disability history in schools as an imperative, this paper invites disability studies scholars and social justice educators alike to confront the silences around the topic of disability in schools and to create spaces for children to engage in meaningful dialogues about society's responses to human differences.
I am human because I belong.
Navigating Dis/ability: Confessions of a Mother and Disability Studies Scholar
At the outset of this essay, I wish to locate myself and my relationship to the work I describe herein. I am, among many other things, a disability studies scholar, a teacher educator, and a mother; my frames of reference are situated within these identities, my agendas driven by the tasks I associate with these roles. As a disability studies scholar, I endeavor to examine cultural and institutional master narratives on families of children with disabilities, which derive from, and uphold, the constructed meaning of disability in society. As a teacher educator whose work is grounded in the traditions of transformative social justice pedagogies, I strive to prepare inclusive teachers who will instill in their own students an appreciation for human diversity and who are able to recognize and disrupt problematic discourses and practices pertaining to students with disabilities in schools. As a mother, I grapple with how I might nurture in my two children — one who has a disability and one who is culturally understood as nondisabled — a positive identity, a sense of self-worth, and an ethic of caring and social consciousness, within the context of an ableist society which positions disability as a predominantly negative phenomenon, families like mine as non-normative, and children with disabilities as "other."
Campbell (2001; 2009) explicates the concept of ableism as the persistent devaluing of disability or as viewpoints in which disability is cast as an inherently negative state of being. Ableism operates as a "pervasive system of discrimination and exclusion that oppresses people who have mental, emotional, and physical disabilities" (Rauscher & McClintock, 1996, p. 198). Dominant cultural narratives are deeply entrenched in ableism, and perhaps nowhere is this more evident than in the master narratives on normative motherhood and desired children that surround the birth of a child with a disability. My own awareness of ableism became heightened when my daughter was born — and shortly after found to have an extra chromosome on her 21st pair. I found myself bombarded with implicit and explicit messages about disability as a predominantly negative phenomenon. In interpersonal and institutional discourses, cultural definitions of children with Down syndrome as undesirable ("Why didn't you just have an amniocentesis?"), beliefs about families of children with disabilities as burdened ("God only gives special children to those who can handle it"), and notions about the experience of raising a child with Down syndrome as outside the parameters of normative motherhood ("You must have the strength of a saint") were upheld. A more subtle form of ableism manifested itself in the comments of some well-meaning friends and acquaintances who assured me that, at least at first glance, "nobody could tell" that my daughter had Down syndrome. I was, and I continue to be, intrigued by the idea that in the cultural environment within which I exist, it is generally taken to be an unquestioned good that a baby who has Down syndrome might "pass" for one without.
Later, I encountered a somewhat different form of the discourse of "passing" — this time in the context of inclusive schooling. In numerous conversations with my daughter's elementary school teachers over the years, when I have inquired about how they might introduce or discuss the topic of disability in the classroom, or how they answer questions from classmates about my daughter's differences, I have generally been assured that her classmates "don't notice anything different" or that "she blends right in, so nobody can tell." I am skeptical about these claims. Do young children actually not notice differences in the ways in which some of their peers communicate, learn, or move around? Are they not curious about the adaptive devices, the modified classwork, the occasional removal from the classroom of some students, or the presence of professionals delivering specialized services to some others? Should their lack of questioning be taken as indication that they are not curious about differences, or might this perhaps signal that they have learned to silence their curiosity about certain kinds of differences?
It is these silences around the full range of human variation and these unquestioned assumptions about the inherent goodness of the invisibility of disability with which I am concerned. I view these through the lens of ableist ideologies in schools and society. In his seminal studies on intergroup prejudice, Allport (1979) explicated that physical proximity alone is not enough to reduce intergroup prejudice; rather, prejudice reduction is most likely to occur when members of different groups are positioned as having equal status and are institutionally supported to collaborate with each other in pursuit of common goals. Therefore, problematizing the absence of conversations around disability in schools, I question whether nondisabled children who sit alongside a child with a disability in an inclusive classroom can gain either any meaningful understanding of disability or any genuine appreciation for the diversity within their school community if there are silences around the questions they surely must have. Additionally I question how children with disabilities, such as my daughter, can develop a positive sense of self if one aspect of their experience — or one facet of their identity — is never acknowledged or named? These are the questions with which I grapple daily and which provided the impetus for the project I discuss in this essay.
"Disability Rights Movement? What's that?" The Omission of Disability History in K-12 Curricula
Disabled people have a collective story — one that is situated in institutionalized ableism and in which they have been often denied access to their most basic civil rights. As Davis (2006a) states, people with disabilities have been isolated, incarcerated, mistreated and controlled to a degree unequal to that experienced by any other group. Although the collective history of the disabled is an account of oppression, it is also an account of radical action, empowerment, and the evolution of disability pride and identity. Like members of other historically oppressed groups, disability rights activists have forged a civil rights movement aimed at challenging the marginalization of people with disabilities and positioning them as part of the mainstream of society (Connor & Gabel, 2010).
In recent decades, there have been drastic changes in the ways in which people with disabilities in the US have been understood and treated, in no small part as a result of the efforts of disability rights activists and the emergence of the disability civil rights movement. Yet, the story of disabled people in America has generally remained outside of the public awareness and "in the locked wards of academic inquiry" (Burch & Sutherland, 2006, p. 127). Race, class, and gender have been the dominant lenses for studying social history in the US since the 1950s and the conspicuous impact of this can be seen in American history textbooks; today it is inconceivable (and rightfully so) to teach American history without including the important role and collective histories of ethnic minorities, the working class, or women (Burch & Sutherland, 2006). However, American history textbooks do not include disability in a meaningful way, rendering it inaccessible (Burch & Sutherland, 2006); indeed, the vast majority of high school graduates in the US are unlikely to have any knowledge of disability history nor any awareness of the existence of the disability rights movement, as typically there is little or no mention of these in k-12 curricula. Alarmingly, like their students, teachers too seem to have little or no knowledge about these topics. To wit, each semester when I ask my graduate students — most of whom are in-service teachers working toward their TSD (Teacher of Students with Disabilities) certification — to share their thoughts on teaching disability history in k-12 classrooms, the overwhelming majority state that they have not heard of such a thing ("Disability rights movement? What's that?"). Ironically, on more than one occasion, my students have mistakenly understood my question to be a query about teaching history to students with disabilities, rather than teaching about disability history. This represents a missed opportunity and a loss at many levels. For one, as Sarason (1999) asserts, every professional should have knowledge of the history of their field "because without such knowledge one's own sense of professional identity is an impoverished one" (p. xviii). Additionally, as Kudlick (2003) states, in k-12 education, disability is a topic worth studying in its own right; not only does it provide a more nuanced picture of power and oppression in our country, but it simultaneously allows students to explore complex issues of what it means to be human, who gets to decide, and how we, as a society respond ethically to human differences.
Ableism in the Academy: Silences around Disability Oppression in Social Justice Education
The reduction of prejudice and discrimination is an identified objective of progressive multicultural education (e.g., Banks & Banks, 2012; Nieto, 2000); many social justice scholars have asserted that multicultural education needs to question the domination of some groups by others and to address issues pertaining to injustice head-on through critical pedagogy — also called transformative or emancipatory pedagogy (e.g., Apple, 1996; Giroux, 1991; Nieto, 1999; Sleeter & Grant, 1993). Progressive educators have responded to this need by infusing anti-bias (e.g., anti-racist, anti-sexist, etc.) curricula in schools. However, there is a glaring omission of the topic of disability oppression from critical multicultural education (Lalvani & Broderick, 2015), and in conversations on social justice, disability has "traditionally been turned away from the table" (Connor & Gabel, 2010, p. 202). As Hamre, Oyler, and Bejoian (2006) state, even in the "progressive spaces where commitments to social justice are real and enduring, the lives and experiences of people with disabilities are sometimes overlooked" (p. 91). Perhaps this is because disability continues to be regarded through the lens of deficit; despite having come a long way in our understanding of disability, even today, society and the academy alike rely on a medical model paradigm in which disability is "cast as a diminished state of being human" (Campbell, 2001, p. 44), rather than as naturally occurring form of human diversity.
In contrast, the social model of disability (Oliver, 1990) rejects the notion that people with disabilities are inherently "defective" and solely in need of rehabilitation, positioning them instead as a marginalized minority group. Disability studies scholarship, grounded in the social model, is concerned with the socio-political constructions of disability and normalcy; as such, it is less interested in human differences per se, and more interested in what society makes of these differences (Davis, 2006b; Linton, 1998). Framed in these perspectives, in recent years there has been a growing push for the positioning of the topic of disability oppression and ableism under the conceptual umbrellas of multicultural education and social justice education (e.g., Connor, 2012; Ware, 2006). These scholars argue that if social justice education aims to prepare future citizens to effect change in society, then we need to problematize the general omission of the topic of disability from the "social justice inventory" (Slee, 2001, p. 174).
"They Don't Even Notice" Discourses on Children's Understanding of Disability and Difference in Schools
A pervasive master narrative in schools today pertains to the notion that young children "don't notice differences" among themselves. As noted earlier, over the years whenever I have asked elementary school teachers about how they might explain my daughter's differences to classmates who express curiosity, or about how they discuss disability as human variations in the classroom, I have typically received response such as: "We don't need to say anything — they don't even notice she's different" or "They don't ask any questions — children are so accepting." Similarly, it is not uncommon for a teacher to claim that he/she treats "each student the same," or that a visitor to their classroom would be "unable to tell which child has a disability."
In dominant educational discourses steeped in ableist assumptions about the negative nature of disability, not noticing disability seems to be understood as an unquestioned good. This is resonant of the "colorblind ideology" in schools, i.e. teachers' beliefs that they do not notice children's race (Schofield, 2004). Critical educators discuss colorblind ideology as antithetical to fairness and tantamount to racism (Bonilla-Silva, 2003; Choi 2008). As Gordon (2005) writes: "Colorblindness is a bid for innocence, an attempt to escape our responsibility for our White privilege. By claiming innocence, we reconcile ourselves to racial irresponsibility" (p. 143). Highlighting that there is often a silence around racialized conversations, social justice educators have called for more open dialogue on race in schools. In response, many teacher education programs have introduced Critical Race Theory and Critical White Studies in an effort to prepare teachers to be able to develop curriculum and pedagogy in relation to institutional racism (Choi, 2008). Posing a paradigmatic challenge to colorblind ideology, critical multicultural education positions the conversation on race at the forefront in any analysis of social relations (e.g. King, 1991; Sleeter, 1996; Tatum, 1997).
Less critiqued however, are educational ideologies in which fairness is interpreted as equal treatment, and claims about not noticing disability are positioned as unbiased ways of relating to students. Dominant narratives entrenched in these ideologies have hitherto remained largely unchallenged and consequently there are few meaningful conversations about disability in schools. Ware (2001) asserts that many teachers, even those who genuinely strive toward inclusivity, feel concerned, fearful, or ill-equipped to take on discussions about disability within their curricula, believing that someone else would know more about this topic. When disability is left unmentioned in the classroom, it sends an implicit message to students that this topic has little relevance to them, and furthermore, reifies the notion that disability oppression does not exist. Therefore, there is an urgent need for educators to engage children in deconstructing hegemonic notions about disability and in exploring alternative narratives through critical pedagogies (Ware, 2005). To this end, presenting disability through a cultural lens is imperative. As Connor and Gabel (2010) argue, when teachers actively position disability as a form of diversity, they will be able to teach their students to embrace differences without stigmatizing it, to confront ableism, and to recognize disability as a natural and inevitably occurring difference.
"Play! Don't Stay Away": A Critical Inquiry Project in a Fourth Grade Classroom
With regard to the persistence of negative assumptions about disability, Ware (2001) asks: "dare we do disability studies" in schools(p. 107)? Others have similarly called for the infusion of disability studies in k-12 curricula and the use of critical pedagogies aimed at teaching children to recognize and disrupt ableism (e.g., Connor & Gabel, 2010). Consistent with these ideas and based on a belief that issues related to group prejudice can be explored at any grade level, I developed a curriculum for a critical inquiry on the topic of disability, in/exclusion, and ableism which I implemented (as a pilot) with a small group of students in my daughter's fourth-grade classroom. In this essay, I discuss the process and outcomes of these students' engagement in the project — which in due course obtained the student generated title of "Play! Don't Stay Away" — in which we collaboratively endeavored to explore the constructed meaning of disability and our own negotiated identities within this construction, and to understand the nature of inclusion/exclusion, community belongingness, and social change.
Conceptual Framework and Objectives.
The inquiry project was conceptually based in social model (Oliver 1990; 1996) perspectives on disability as a form of human variation and people with disabilities as a historically marginalized and stigmatized group (Davis, 2006a; Hahn, 1998; Linton, 1998). Furthermore, it was grounded in the tradition of emancipatory pedagogies (Freire, 1979), which emphasize that teaching individuals to recognize and confront all forms of oppression is a fundamental element in bringing about radical change in society. Informed by a progressive understanding of multicultural education (Banks & Banks, 2012; Nieto, 2000), and consistent with Picower's (2012) framework for social justice education, this project allowed students to not only gain an appreciation for diversity and knowledge about social movements, it also provided them with opportunities to educate others and to become agents of social change.
A further grounding premise in developing the project was that in order to examine the constructed nature of disability it is necessary to include multiple perspectives — including those of individuals who identify, or have been labeled, as having a disability. To date, as Solis and Connor (2007) point out, efforts to infuse disability awareness in schools rarely take into account the perspectives of labeled students. This project aimed to allow children to explore human differences and society's responses to these through the lens of their own identities as those with and without labels of disability. The students who engaged in this project occupy insider and outsider statuses with regard to the category of disability. I position myself as occupying some space in-between as an insider-outsider; I endeavor to navigate this role mindfully, and with an awareness that my insights derived from my experiences of mothering a child with a disability co-exist with my status as someone culturally defined as nondisabled, and therefore inevitably, with my own able-bodied privilege.
Broadly, the project was driven by the following objectives:
- To allow students to explore the constructed meaning of dis/ability from the positions they occupy.
- To explore their multiple identities within a spectrum of human differences.
- To develop an understanding of disability as diversity and to draw from a civil rights framework in conceptualizing our response to human differences.
- To examine disability oppression in historical as well as contemporary contexts.
- To mediate the rethinking of the master narratives on disability.
- To help students explore their own role in the creating of inclusive communities.
Structure and process.
Five students in one fourth-grade classroom were invited by their teacher to participate in an inquiry circle. Four of them, whom I will refer to as Hannah, Ellie, Wendy and Amelia 1 , identify as nondisabled and do not carry any labels of disability in school. The fifth student — my daughter, Minal — has the label of intellectual disability in school and identifies, among other things, as someone who has Down syndrome. The five students were well known to each other, having been in school together for the several years. The project was presented to them as voluntary, enrichment classwork. They understood that it would entail learning about the topic of disability and, depending on the direction the project took, specific disabilities such as Down syndrome. Each student who was invited expressed a strong willingness to be involved in the inquiry circle. For Minal, the decision to participate involved some additional considerations. She understood, as did the other students, that the project was concerned with an exploration of topics related to disability. Additionally, both her teacher and I discussed with her that the topic of Down syndrome would come up, and that it was likely the other students might have some questions. She considered her decision for a few days, weighing whether or not she would be comfortable with the idea of 'telling people" about her disability against her desire to "learn all about disabilities." Ultimately, the excitement generated by her peers who were eager to be in the group swayed her; her decision to participate was motivated by not wanting to be left out of an activity in which her friends were engaging, and by her understanding that she would be learning about disability alongside classmates with whom she felt comfortable.
The project extended over a six-week period; we met once per week for approximately hour-long sessions. At each meeting, particular topics were introduced. Students began by sharing what they already knew or believed, as well as what they wished to find out. They were presented with information (text, films or videos) and we engaged in discussion, written activities, or games designed to stimulate critical thinking about the topics (See Table A. for a description of the topics for each week). Before the close of each session, students generated a list of new questions, set agendas for what they each wished to explore further, or suggested ideas for further inquiry as a group (See table A for examples of questions raised). Between meetings they completed assignments (usually self-generated, and some assigned by me) and engaged in "journaling" — writing responses to questions or their reflections on issues discussed. The project culminated in an information-sharing presentation to the entire fourth-grade community at their school; this was developed and planned by the students.
It is worth noting that at the start of the project, well before any information was presented, each of the five students was keen to ask questions they said were on their minds — and indeed, they had many. We documented all their queries at the outset of the project — 18 in all — and these served as starting points for our inquiry. Some of their questions are listed here:
Hannah: If you have a disability, can you get rid of it?
Wendy: I know some people have disabilities but are they all Down syndrome?
Ellie: I've heard about inclusion classes. Are we in an inclusion class?
Minal: Is Down syndrome the same thing as Autism?
Ellie: Can people with disabilities do things that would be impossible for us to do — like play the trumpet just on the first day?
Amelia: Can someone who does not have Down syndrome have the same symptoms as someone who has Down syndrome?
Their questions suggest that, contrary to dominant educational narratives, children are indeed curious about disabilities. That the five students who generated this extensive list of questions had not voiced them before might have been taken as indication that they had not noticed the difference in abilities, appearances, or behaviors of their classmates. On the contrary, it was clear that they had noticed, and furthermore, perhaps having internalized dominant beliefs about the goodness of not noticing — they had hitherto silenced their questions.
| Week One | Topic What is an "inquiry circle"? How is it different from other kinds of learning? Differences among humans Do biological/physical/learning differences determine the kinds of lives we have? What is a disability? What is Down syndrome? |
|---|---|
| Student generated questions for further inquiry selected list (Question for Minal): When did you first know you had Down syndrome? Is Down syndrome contagious? Do people with disabilities act in different ways or do different things? Can someone who does not have Down syndrome have the same symptoms as someone who has Down syndrome? (Question for Priya): How did you deal with it when Minal was born? What was your reaction and how did you knowledgize (Sic) yourself? I want to know more about what makes people with Down syndrome different from someone who does not. Do all people with Down syndrome need glasses? | |
| Week two | Topic Different kinds of disabilities Disability history (e.g. institutions, ugly laws; circus exhibits) Attitudes, beliefs, and assumptions about people with disabilities |
| Student generated inquiry questions Is Down syndrome a physical or learning disability? (Question for Minal): Did you look different when you were a baby? If you have a disability can you still learn? Can animals also have disabilities? How would the scientists know they might scare others? Do they have proof? | |
| Week three | Topic Inclusion and exclusion in schools and communities Disability related laws; schooling and community Access: what it means and what are the different kinds Is our school and community accessible in all ways? |
| Student generated Inquiry questions (selected list) Teasing a kid with a disability is the same as teasing a kid without a disability. What's the difference? Do you think parents would prefer a private or public school? I want to know if we are in an inclusion class and how many inclusion classes there are in our school. I want to learn if there are schools for all types of disabilities. Is our school an inclusion school? What about other schools? Why they are not inclusion schools, or are they? | |
| Week four | Topics Diversity and differences; the range of diversity in society What makes us human? Disability culture Prejudice and discrimination |
| Student generated Inquiry questions What is injustice? Is Minal not allowed in places sometimes? Are kids with Down syndrome like adults who have Down syndrome? | |
| Week five | Topics: Creating an inclusive community Making a difference in the ways in which people are accepted/not accepted in the world. |
| Student generated Inquiry questions How can we share what we learned with the whole school? I want to learn all about disability and community Why do some people talk down to kids who have a disability? What should we do if someone is being a bully or mean? | |
| Week six | Topics: Sharing knowledge with others; what do I want others to know and do? Planning for group presentation at school. |
| Student generated Inquiry questions N/A. This last session was devoted to preparing writing information for the presentation. |
Project Outcomes
In this section, I discuss each student's engagement in the project vis a vis the particular lenses they employed. These are presented as storied accounts of their unique learning experiences over the six-week period and their shifting understandings of the issues they chose to explore. Their narratives are derived from their journaling, my own recorded notes of their questions and contributions to the discussions, and from their scripts written for the information-sharing presentation for the school community. In an effort to maintain authenticity, I include, whenever possible, their own interpretations about what they gained from the project, the specific questions they asked, the messages they wished to share with the community, and their perceptions of the ways in which their understanding of human differences were transformed.
"People Need All Kinds of People": Hannah's Narrative
Hannah focused her inquiry on finding out more about the historical mistreatment of people with disabilities in society; her questions had to do with how or why "people got away" with certain actions, which from her perspective were "unbelievable." Initially, upon hearing that in the past many children with disabilities lived away from their families, in institutions where they received little care and attention, Hannah decided to find out for herself if this was true. She was also interested in finding out more about the "Ugly Laws," and whether they still exist in any form — more specifically, she wanted to learn whether some people, even today, are implicitly or explicitly denied access to public places based on their appearance. Her interest in these topics fueled many conversations within the group about exclusion for various reasons. For example, in response to Hannah's questioning about whether people could legitimately be denied access to public spaces, Amelia responded that in the past, African-Americans were also not allowed to go to the same public places as Whites; thus through these discussions they made connections between people with disabilities and other historically oppressed groups. Hannah also shared with the group that she had found information which confirmed not only the past existence of Ugly Laws and of the practice of institutionalizing children with disabilities, but also that there had been many "famous people" in support of these (these pieces of information, she reportedly acquired with the help of her parent). During the group presentation to the school community she read this piece she had written:
About 50 years ago kids with disabilities could not go to school, they got took (Sic) away from their parents and brought to a building and they just sat there doing nothing all day/night. In this place, they did not do much because they did not have a lot of toys or anything to learn… I think it's VERY unfair because imagine being pulled away from your family and brought to some random place with about 100 kids with no toys, not much to eat, and not much to drink and you'd get no education! I'd be sad!… Also, and can you believe this? Many people with disabilities were not allowed at restaurants or public places. People thought that it would disturb or scare the customers. … It's true! You should look it up yourself!
In the group, Hannah raised many questions about fairness and civil rights. As her interest in disability history evolved into concerns about decision-making in the context of power hierarchies, she began to ask critical questions pertaining to: "who gets to decide" in schools and in society. Reflecting on this issue in her journal, she wrote:
I think this was very unfair to not allow people to be where everyone else was. People are people and they should be who they are and have the same rights. Why should some people decide for other people and boss them around? They probably were saying "they're different. They can't come here they should go somewhere else." But no! It's not fair. Kids with disabilities can still learn they just need help with it and that's not bad!
Following this particular journal entry, during a group discussion she questioned whether "the boss is always right," thus initiating a dialogue among her peers and about the nature of what experts "know" to be true. Later, she wrote the following, which she also shared in her presentation:
The doctors told parents it was a good idea to put their kids with disabilities in institutions because they thought that they would not be able to learn in school… When people were in institutions they did not get any education or anything. But the doctors were actually wrong because a lot of kids with disabilities now go to public school and they learn with everyone else. They just learn differently or it may take them longer.
In these ways, Hannah examined the role of power and privilege in the construction of knowledge, and the consequences of unquestioned adherence to what we "know to be true." This led her to reflect on the idea that the lack of opportunities to meet someone with a disability might lead people to make negative assumptions about their capabilities. For example, she wrote:
Maybe a boss of a hair place would say — no you're autistic you can't cut hair you'd mess up! But you never know, maybe they're really good at it. Because they've never met anyone who is Autistic.
Hannah's provocative interrogation of these issues pushed the others in the group to consider the implications of segregated environments for some people, and through this they came to new realizations. For instance, Ellie expressed her new belief that it is a good idea to have inclusion in schools because if this were not so, she would "not know any children with a disability." Taking this a step further by making the connection to her friend Minal, Hannah responded: "Wait — I just realized that if we all went to school a long time ago, we would not be friends with Minal, because Minal would not be allowed at Middletown 2 school." This sparked a conversation among all five students about whether, in such a world, people might be denied their rights for any number of reasons, based on what Hannah described as "anyone's random prejudice." During this discussion, there appeared to be a collective shift in their understanding about injustice; moving from moralistic statements about injustice as "bad" or "wrong," they now began to consider its implications for themselves, the people they knew, and the community to which they belong. In her presentation Hannah shared this realization:
If people with Down syndrome did not come to my school, I would never have met anyone with Down syndrome or disabilities. What a boring world it would be….People need all kinds of people in their lives, because otherwise, when they meet someone who is different, they won't have a clue.
"Down Syndrome is in Your Cells but Not in Your Heart": Wendy's Narrative
Wendy focused on learning specifically about Down syndrome, stating on the very first day of the project that she wanted to find out as much as she could about it. At first, she expressed a great deal of curiosity about its biological nature ("What causes it?" and "Can they get sick more than other kids?") and about the developmental outcomes for people with Down syndrome ("What kinds of things can people with Down syndrome learn to do?"). During the first two weeks, Wendy looked up information on the causes of Down syndrome — enlisting a parent to help her seek more information online about the "extra chromosome thing." Each week she shared with the group some "interesting facts" — such as the number of people in the US who have Down syndrome ("400,000"), and whether there are differences by gender ("no difference"). She also had many questions for Minal, for example: "When did you first know you had Down syndrome?" (Minal's reply: "Always")
Over the course of the project, Wendy's focus shifted from the biological aspects of Down syndrome to questions about whether this genetic variation leads to differences that matter; her interest in the impairments related to Down syndrome evolved into an interest in society's reactions to individuals with Down syndrome. She now began to ask questions such as: "Why are people so afraid about Down syndrome" and "If so many people have it, why do people think it is a big deal?" For the information session, she had initially prepared a brief essay on cells and chromosomes and created illustrations to explain the genetic cause of Down syndrome. However, after engaging in conversations with her peers on the topic of prejudice and discrimination (discussed later in this section), she stated that what she mostly wanted people to understand was that, despite the genetic differences, "kids with Down syndrome are people just like you and me." During the presentation, following her detailed explanation of the extra chromosome in people with Down syndrome, she added:
Down syndrome is not a sickness or a problem, but a lot of people may think it is…People with Down syndrome have some things that are different, but basically, they are people just like you and me. I want people to know Down syndrome is in your cells, but not your heart! They are not too different. They could just need a little help but eventually they learn. The same way you do. People are just people.
During the course of the project, Wendy also became increasingly interested in the issues of "expert" knowledge originally raised by Hannah. In her journal, reflecting on the denial of access to schooling and the practice of institutionalization of children with Down syndrome, she wrote:
I think doctors and scientists thought it was okay….. They thought parents could not teach kids. But how did they know? How would the scientists know they might scare others? Do they have proof?
At one meeting she contemplated aloud that perhaps the reason children with disabilities "were put in places away from their parents" was because the scientists and doctors "did not have any friends who had disabilities, or know any real people with disabilities." Additionally she shared the information that many children with Down syndrome go to a "special school for just children with disabilities." This sparked a conversation among the group members about what they believed might be the benefits of being in a classroom like their own which "does not exclude anyone." On this topic, Wendy later wrote in her journal:
I want to live in a world where all people are treated equally….I think inclusion is a good experience for everyone. Why should they be in separate rooms? Because a kid is a kid and there is no difference.
"Spread the Word… We Can All Change the Community": Amelia's Narrative
Amelia's interest lay in exploring the issues of prejudice and discrimination, specifically, "what's the difference" between the two concepts, and in understanding the nature of injustice. During the course of the project, she asked critical questions such as: "Why are people afraid of some other people," and "Does prejudice and discrimination still happen in schools?" She came up with the idea of surveying people she knew about whether they believe discrimination takes place in our schools and communities, and if so, in what form. Although her questions had originated around the issue of disability discrimination, she began to make connections between people with disabilities and members of other historically oppressed groups. During the group presentation she stated:
We need to know that we are ALL actually different. It's not just if you have a disability. You may be different because you are from another country or culture, or speak a different language or have a different skin color or race. Or you may have a disability. Everyone should be able to do fun things without being excluded, discriminated or left out.
Her inquiry on prejudice and discrimination led her to the discovery that these are not things of the past; she shared with her peers her understanding that "in some places still there are no ramps," and that "some kids think that people with disabilities are weird or can't do things so they don't play with them." She concluded that injustice is a result of ignorance, and that ignorance is a result of "not asking questions!" In her journal, Amelia reflected deeply about people's fear of asking certain kinds of questions — and she raised this complex issue in the group. In her presentation she stated:
I think that we should not be afraid to ask questions. We can find a safe person to ask questions to, like our teacher or parents. Maybe they don't know the answers but we can all find out together.
Amelia's efforts to understand the nature of prejudice and discrimination led her to deeply question her own role in making changes in her school community and in educating others about prejudice. During one group meeting, she asked her peers: "So, what should we do about it?" Thus she initiated an important dialogue on how the group might educate others about what they had learned; it was Amelia who championed the idea of having an information-sharing presentation for the rest of the fourth graders at the school. Her enthusiasm to develop a platform to "spread the word" was soon shared by others who became motivated to create slogans, posters, t-shirts, and scripts for the presentation. At the presentation, Amelia stated:
We can all change as a community if we become more aware of people with disabilities and we are not ignorant about what it means. I think that all of the people in this world should know about Down syndrome and disabilities. I bet some questions you might have are….. "What's wrong with them?" or "Why are they like that?" or "What do they have?" I want to answer those questions and also maybe tell you what you can do to spread the word about disabilities.
In her presentation, Amelia also discussed the role of each student in creating an inclusive school community, offering these suggestions:
If someone is a bit different from you, you can ask them to play or say "Do you want to sit with me?" or, just be nice and be yourself around them! Also, if you see someone picking on someone with a disability, don't be afraid to say to the bully: "Stop!" or "That's not nice!" You don't need to talk down to people with disabilities. They are not aliens! They want your respect!
"People Make Random Assumptions": Ellie's Narrative
Ellie focused her inquiry primarily on two topics: laws pertaining to people with disabilities and inclusion in schools. Following one group meeting during which I presented some information about Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA), Ellie expressed an interest in finding out more information about these laws. In her journal, she wrote these questions: "Do all places have to abide by these laws? What will happen if they don't?" and "Why didn't we always have these laws?" At a subsequent meeting we discussed these questions as a group, and Ellie shared information on disability laws, which she had found online.
Like each of the five students in the inquiry group, Ellie had encountered the discourse of "inclusion" in the specific context of their own classroom. At their school, this term is generally used (rather narrowly) to refer to classrooms which are collaboratively instructed by a general education teacher and a special education teacher, and in which several students with IEP's are educated alongside their nondisabled peers. Ellie stated that although she had heard people use the term "inclusion classroom" frequently, she was not quite sure what it meant. Her interest in the concept of inclusive education led to many discussions and sparked new questions for her such as: "Do all schools have inclusion?" and "Are there schools for all types of disabilities?" With regard to the latter, she wrote that she was surprised to learn that there were indeed entire schools "just for people with disabilities," and even schools for specific kinds of disabilities. Making critical connections, she expressed her emerging beliefs about the existence of separate schools as one reason that she did not know "children with all kinds of disabilities." Furthermore, as she wrote in her journal, she was surprised to learn that in the US, "most children with disabilities like Down syndrome do not go to inclusion classes." Putting all the pieces together, she shared the following at the information session:
Today, lots of children with disabilities go to schools with all other children. But even today, the majority of children with disabilities like Down syndrome go to separate schools and classrooms. This means that MOST children in America like me don't really ever get to meet children with Down syndrome!!….This is why people make random assumptions that kids with Down syndrome can't read or write or learn. They make random assumptions about kids with Down syndrome, because they haven't even met someone with Down syndrome! Since I have met someone with Down syndrome — my friend Minal — I know that these random assumptions are not even close to true.
Reflecting about inclusion on a broader level, she read aloud what she had written on the topic of differences among students in schools:
I think kids with disabilities should be taught in a classroom like mine because not only do the kids with disabilities learn new things but the kids without disabilities will learn also! If all children learn together, we can all learn something. We can set a good example for our friends. We can all learn that being different not a big deal….Being different is one small thing about them, but it's not the whole thing. We are all unique and different.
"We Are Not Aliens": Minal's Narrative
Minal's experience of participating in this project was both similar to, and profoundly different from, those of the other students. As someone who identifies as a person with a disability, she processed much of the information in the context of how it related to her own life and schooling. Occasionally, because the other four students often asked her questions about her life experiences, Minal was positioned in the role of information provider — a role with which she seemed quite comfortable. At other times, she grappled with questions such as: "Is it okay to have a disability?" and "Can I tell people that I have Down syndrome?" This latter was a concern she raised on numerous occasions, both with me privately and also with the other girls in the group. During the first week she stated in the group that she would not want people other than her close friends to know she has a disability. Although she would not articulate the reasons for this, it suggests that she may have internalized the negative values associated with a disability identity. Thus, for Minal, this project was not just about exploring the meaning of disability, it was also about her confrontations with the stigma associated with Down syndrome and her negotiations of a disability identity. Early on, in response to the question: "What is a disability?" which I had posed to the group, she wrote:
Disability means you do things differently. We are NOT from outer space. Space aliens. We are all different.
Over the course of the six weeks, Minal became increasingly focused on the topic of inclusivity in schools and access to schooling. Her engagement in group discussions was highest when the topic was exclusion in schools. Like the others in the group, she expressed indignation upon learning that in the past, many children were denied access to schools because they had a disability. She stated in the group: "Then children with disabilities would not be allowed to go to Middletown school." As such, she seemed to be making connections to the implications of this information for her own life. In her journal she wrote:
I like to go to school. It is mean to be excluded. I don't want to go to another school. I want to go to Middletown. It is not fair if I did not go to Middletown. I would feel upset. That is not fair to keep me away from my school. That is really mean. That makes me mad!
Later, building on these reflections, she wrote the following to be read aloud as part of her presentation:
It would not be fair if I could not go to school at Middletown. Some people with Down syndrome could not go to school a long time ago, and that was really mean. If someone said I was not allowed to go to Middletown, I would feel really angry because that would not be fair. If I did not go to Middletown, I would not meet my friends!
Over the course of the project, Minal appeared to experience a growing level of comfort talking about disability and her statements seem to suggest that she was beginning to view disability as more positive attribute (or at least, not a negative one). This was evident both in her writing and her comments to the group, for example, she wrote in her journal: "I want to learn all about disability and community." Additionally, during the last week of the project she wrote these three sentences as separate journal entries:
It is okay to have a disability.
I think having a disability is important.
I would live where people with disabilities are included.
It was also evident that she experienced a new sense of pride in identifying as someone with a disability. She began to talk about herself more openly in the context of her disability to her friends and, when the group was planning for the presentation, she stated that she would like everyone to know about Down syndrome. During their presentation, she announced to the school community:
I have a kind of disability! It is Down syndrome!
Additionally, she read this — her definition of disability — which she had written for her portion of the presentation:
Disability means that you do things differently. You can get help or you can do things yourself. … Some people are afraid of children with disabilities. That makes me feel upset…. People who have disabilities are NOT from outer space. They are NOT aliens. We are all different. We are people.
Future Directions
This essay is an invitation to all those concerned with societal responses to disability to consider the possibilities for opening authentic dialogues about human differences in schools. Through their engagement in this project, these five students gained an understanding of disability - not as impairments - but as the experience of disablement, i.e. the attitudinal or systemic barriers faced by people with disabilities, and society's complicity in the existence of these. Creating a space for the rethinking of master narratives on disability, this project provided opportunities for students to challenge ableist assumptions, problematize the exclusion and segregation of some individuals in society, and locate themselves as agents of change.
Like other multidisciplinary critical fields of inquiry (e.g., feminist studies, critical race studies, queer studies), disability studies is founded on the quest for equity and social justice; its central goals include the questioning of dominant paradigms based in power and privilege (Gabel & Connor, 2008). Since its inception, disability studies has made significant impact in a wide range of disciplines, however, the importance of infusing critical perspectives on disability in schools lags behind other agendas, despite the work of many disability studies in education (DSE) scholars who champion this effort (e.g., Connor & Gabel, 2010; Ware 2001). In the context of schools, issues related to disability are generally viewed as special education concerns, rather than as social justice concerns (Lalvani & Broderick, 2015). Ironically, even within disability studies, the work of DSE is sometimes mistakenly understood as merely a more progressive form of special education — rather than as anti-ableist work relevant to the core agendas of disability studies.
Connor and Gable (2010) argue that the discussing of disability as a form of human diversity in classrooms is a moral imperative. I wholeheartedly concur; indeed, I question whether some of the central agendas in disability studies, such as the destigmatizing of disability, can be achieved without teaching children to recognize and confront ableism as part of anti-oppression curricula and without problematizing the silences around disability in schools. This essay is a call to all those invested in issues of equity and social justice to re-imagine what it might look like if, in the context of schooling, we broadened our definition of human diversity, engaged in dialogues on institutionalized ableism and allowed students to explore the constructed nature of disability; if, as Ware (2001) puts it, we dared to "do disability studies" in schools.
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Endnotes
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These names have been changed to ensure anonymity.
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The name of the school has been changed.
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