A Child, A Family, A School, A Community

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FOREWORD

This significant contribution to the Disability Studies in Education (DSE) series takes the reader inside a model inclusive elementary school that embodies DSE tenets within its everyday practices. It is also, perhaps more importantly, the story of a school community that changes the life of a family and a school community changed by a family. Told in a “double-voiced” format by Diane, the mother of a child with a disability (who is also a classroom teacher and teacher educator) and David, a DSE scholar/teacher educator, the authors clearly and skillfully render how the personal is political through the integration of storytelling and DSE theory. In each chapter, Diane shares a narrative that reveals a particular point along her family’s journey, followed by David’s analysis of the narrative using DSE theory. For readers unfamiliar with the tenets of DSE, the volume is an excellent introduction to the application of DSE to a real-life school and family context.

This is the story of a family; however, it is not without significance that it is a story told by a mother. Although the father appears within the narrative, it is without question a mother’s story. As a fellow DSE scholar who writes about mothers of children with disabilities, I have argued elsewhere that the experience of motherhood necessarily intersects with the social influences of the culture within which a woman carries out her role as mother—and ← xiii | xiv → American culture persists in holding mothers responsible for the outcome of their children to a greater degree than fathers. In the case of disability, mothers are held to even greater responsibility for motherhood gone “off-script”. Mother and child become inextricably bound by perceived imperfection. Pressures intensify as children with disabilities become increasingly defined in terms of their relationship to an established norm of social and academic performance. As illustrated within Diane’s story (and supported within the literature), mothers are more likely than fathers or couples to engage with school personnel and with far greater frequency and intensity.

I have long contended that we need only to look to mothers of children with disabilities for the most reliable assessment of special education practices. Mothers intimately experience how public schools respond to disability. In sharing her story, Diane contributes a powerful and cogent account of outcomes resulting from the segregation of her son in one district and his full inclusion in another. She takes the reader into the interior of her family where outcomes matter in the daily business of living—rendering visible the significant impact of each school context (and its accompanying responses and choices in regard to disability) upon not only the child with a disability but also the entire family. Accompanying Diane’s narratives are David’s analyses that serve to “connect the dots” by moving the reader from the micro-context of a single family to the macro-context of society and culture where conceptualizations of disability originate and influence schooling.

Unlike more traditional special education research that seeks generalization, this narrative study is meaningful for its specificity of detail about one child with a disability and the school professionals who serve him. At the heart of Diane’s story lies the significance of context— a departure from the historical emphasis that special education has placed upon objectivity. The reader learns what works for a particular child with a particular disability in a particular school context—and the take-away is to consider how to apply what works here in another equally particular context. Diane acknowledges that her positionality as English-speaking, White, middle-class and married influenced her access in securing a more appropriate context for her son and writes about her concern for the children who remain in settings her son was able to leave. Yet, it is also worth noting that there is much to glean about what works in this particular inclusive environment that can be applied to other contexts. As Diane’s story reveals, what works has more to do with the embodiment of a school-wide philosophy of inclusion than any kind of funding distribution. ← xiv | xv →

This volume should appeal to an audience of teacher educators, researchers, administrators, pre-service and in-service teachers, advocates, parents, policymakers, and the general public with and without disabilities. It speaks to the critical need to develop philosophical practices in regard to inclusion (in contrast to mere strategy implementation), to recognize and attend to sites of ableism within our ways of seeing and acting in the world, and to acknowledge and learn alongside a multiplicity of voices whose life experiences intersect with disability. Inclusion, the authors remind us, is not an educational method to learn and implement but rather a decidedly human way of being in the world that requires ongoing negotiation of a particular context in which we give ourselves permission to listen, think, risk, consider, ask, see, collaborate, challenge, love, reflect…and dream!

--Jan W. Valle ← xv | xvi →

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INTRODUCTION

This book grows out of Diane’s desire to paint a portrait of a school in New York State that successfully included her son, Benny, who had previously “failed to function” in two exclusionary/highly restrictive special education classrooms in New York City. In contrast to the city schools, The Boulder School welcomed Benny and supported him and his family in finding ways to ensure his inclusion within all aspects of schooling (Note: pseudonyms are used throughout for children, school, and faculty). In turn, Benny’s presence and participation within the school grew over the years and significantly influenced its general culture in a myriad of positive ways. At the same time, the school also provided an oasis for Diane’s younger son, Adam, who excels academically and socially. In contemplating the same school and the same teachers who met the needs of her two children with such dramatically different learning profiles, Diane felt compelled to chronicle how, and explore why, this school was successful whereas so many others in her experience had not been.

David’s interest in creating this text lies in the fact that Diane had shared this school’s story with him. He became drawn to the challenge of “capturing” and analyzing a school that has attempted to develop an authentic inclusive educational experience for students—a process that is ongoing, admittedly imperfect, yet earnest. Despite major policy changes in regard to inclusive ← xvii | xviii → education over the past three decades, there have been very few clear examples of successful inclusive schools in scholarly works (Danforth, 2014; Hehir & Katzman, 2012) and documentary media (Habib, 2007; 2011) that can be shared in teacher preparation classes. In conversations with Diane, David could see how what was being done at the school to ensure authentic inclusion was, in fact, unsurprisingly, very much in tune with a Disability Studies in Education (DSE) framework. For this reason, he believed it would be worthwhile to document—and discuss—an example of where a “real life” example of inclusive education evolved with what he believes is a DSE-disposition that helps educators, parents, students, and community members best understand and approach how to “do” inclusion.

We both work as inclusive educators in the same teacher education program at Hunter College, part of the City University of New York. David developed the required inclusion course for all general and special educators to have a DSE-framework through which to understand inclusion as everyone’s responsibility and a student’s civil right (Valle & Connor, 2010). For the past three years Diane has integrated her personal story into the course and has brought Boulder staff to speak to her students. Each semester, 5 to 8 Boulder staff members, including the principal, speak to her classes. When Diane spoke extensively with the Boulder staff, they often defer to “instinct” when explaining how they create their school culture. This response, and graduate students’ questions about positive examples of inclusive settings became a primary motivation for her to write this book. While Boulder faculty present with a refreshing absence of technical jargon, we recognize that their general attitude and effective programs are in line with many elements that form the basis of DSE. We also recognize that in order to accurately document Boulder’s approach to inclusive education, a deeper analysis is needed. In an effort to capture what is possible, it is our hope that by analyzing and reflecting upon a school that embodies a DSE-simpatico approach, other teachers and administrators can become familiar with these ideas and see how they can apply within any educational or community setting.

Interactive Format

The format of this collaborative book reflects our mutual interest in inclusive education as citizens and teachers, and our disparate yet arguably connected roles as parent and researcher who are motivated by our belief in the civil ← xviii | xix → rights of providing disabled children access to a quality educational experience. After exploring multiple options of how to structure the book, we decided to craft the text in what can loosely be seen as a conversation between us as authors. There are fifteen chapters written by Diane in which she chronicles her journey and that of her family over the last decade. She begins by describing her disillusion with, and disbelief of, the limited placements offered within New York City’s District 75, a separate structure for children and youth with moderate, severe, and multiple disabilities (Berman, 2009). Exasperated, she searched elsewhere in New York State to find a school that she believed would be a potentially “good fit” for Benny. What follows may be considered the core of the book, a series of largely sequential chapters that each foregrounds a key element of inclusive education by illustrating how that particular element looked in the context of educating Benny, partnering with her family, building relationships with teachers, and the pinnacles and pitfalls of consciously creating an inclusive community. The style and tone is descriptive prose in the genre of memoir, making the story purposely accessible and of interest to a wide variety of people, including parents, administrators, policy makers, pre-service and in-service teachers, and academics. Because it is a memoir, all quotations and conversational exchanges are Diane’s recollections.

After each of Diane’s chapters, David takes the opportunity of further exploring the content through deepening an analysis of the many issues raised in the contextualized history of Benny and his family, Benny’s classroom experiences, and the evolution of the Boulder School. Conceptualizing Diane’s narrative as describing an authentic example of successful inclusive education rather than “a case study” (with its problematic shades of medicalized language), David analyzes how a family and a school strive to “get things right” without any blueprint, rather than excluding Benny from an education alongside his sibling and peers. The story provides a rich, layered picture of what can be done, often by an informed sense of trial and error, when parents, principal, teachers, and community share a common ideal. It also provides an opportunity to actively link DSE to practice, as much of what occurs in this story is—without the participants consciously knowing it—intimately connected to a DSE framework (Connor, Gabel, Gallagher, & Morton, 2008). By utilizing the tenets of DSE and culling from a wide range of DSE research, David seeks to show ways in which practice is related to theory, and theory to practice, while encouraging the growth of DSE work to be practical and explicitly tied to students, families, classrooms, schools, education systems, and policies. ← xix | xx →

Analysis of Chapters

To ensure a degree of consistency, every chapter was analyzed with three broad yet interconnected areas in mind:

(1) What are some important everyday issues about inclusive education raised within the narrative? How did these examples highlight areas such as personal and professional responses to human differences? What were some successful activities used in the inclusive classroom? What were some examples of problem-solving approaches? What were some examples of strength-based perceptions of students?
The purpose of this approach is to recognize and specifically name examples of context-based inclusive practices.

(2) How do elements of the narrative relate to aspects of Disability Studies in Education? What are some connections between DSE to the organization of the school, principal, faculty members, children, and parents? How do these connections resonate with existing literature within DSE?
The purpose of this approach is to illustrate examples of Boulder’s conscious inclusive practices being subconsciously simpatico with the tenets of DSE.

(3) What are some personal connections made with the narrative? In what ways do the issues described touch upon my own observations of almost three decades within education? How do the issues relate to my thoughts about as a citizen, a former teacher, a district professional development specialist who advocated for inclusive practices, and professor of inclusive education?
The purpose of this approach is to both personalize the response and broaden the discussion to many issues related to inclusive education and teacher education.

After each chapter, all three strands are woven together in a short response designed to share observations, create more connections between the issues, and raise further questions about how we create successful inclusive classrooms and schools.

A Brief Description of Chapters

Chapter 1, Leaving a Restrictive Environment Behind, serves to map out the journey. Diane begins at the end of a successful inclusionary elementary school experience for Benny and looks back on the thoughts and fears her family had ← xx | xxi → when leaving a restrictive setting years before. She examines the reasons why some parents cling to the “safety” of a segregated school experience for their children who have disabilities. Providing a panoramic view of the story, Diane sets the scene for details to be shared in the following chapters. David’s commentary focuses on the broad issues and questions raised by DSE with respect to inclusive and segregated education.

Chapter 2, Climate, provides a close up of Boulder as Benny prepares to graduate. The visionary and passionate principal, Clark, is introduced. David reflects on the importance of a creating an atmosphere of true equity and contrasts this with the often prevailing view that inclusion must be “earned,” and can only be done so as the child approaches “normalcy.”