Dismantling the Disabling Environments of Education
Creating New Cultures and Contexts for Accommodating Difference
Table Of Contents
- About the author(s)/editor(s)
- About the book
- This eBook can be cited
- Table of Contents
- Introduction (Peter Smagorinsky / Joseph Tobin / Kyunghwa Lee)
- Part One: Theoretical and Historical Perspectives
- Chapter One: Learning Disabilities: Theory Matters (Curt Dudley-Marling)
- Chapter Two: Vygotsky, “Defectology,” and the Russian/Soviet Approach to Human Difference (Peter Smagorinsky)
- Part Two: Emic and Autoethnographic Perspectives
- Chapter Three: Blind and in Technicolor: A Personal Account of Adaptation (Gina Marie Applebee)
- Chapter Four: On Becoming a Number: Lessons Learned While Adjusting to Life with Multiple Sclerosis (Dorothy Bossman)
- Part Three: Challenges of Inclusion and Practice
- Chapter Five: “There is nothing to do with these girls”: The Education of Girls with Rett Syndrome (Usree Bhattacharya)
- Chapter Six: Confronting My Disabling Pedagogy: Reconstructing an English/Language Arts Classroom as an Enabling Context (Christopher Bass)
- Chapter Seven: Refusing to Become a Drifter: A Preschooler’s Resistance to the Transition to a Special Education Classroom (Kyunghwa Lee / Jaehee Kwon / Jooeun Oh)
- Chapter Eight: Negotiating the Culture of Expertise: Experiences of Families of Children with Mild Autism and Other Sensory/Behavioral Differences (Melissa Sherfinski / Sera Mathew)
- Chapter Nine: Learning from Deaf Education (Jennifer Hensley / Patrick Graham / Joseph Tobin)
- Chapter Ten: Schools as Asylums: A Case Study of a Girl with OCD (Xiaoying Zhao)
- Chapter Eleven: The Emotional Work of Inclusion: Living within Difference at L’Ecole Gulliver (Gail Boldt / Joseph Michael Valente)
- Contributor Biographies
- Series index
This volume is situated within the contours of four related fields concerned with human variation. Disability Studies (DS) and its companion (and in some conceptions, its successor), Critical Disability Studies (CDS), are concerned with contesting the society-wide, debilitating assumptions about people who do not conform to conventional notions of able-bodiedness. Disability Studies in Education (DSE) and Critical Special Education (CSE) focus this compassionate view of human difference within educational institutions, both in classrooms and in the physical and institutional structure of the environment. Our work resides within what we believe to be a useful niche, that of teachers and teacher educators from diverse content areas who acknowledge the potentially disabling effects of bodily and mental diversity, without taking the pathologizing perspective of human difference prevalent in society and often in schools.
DS and CDS emerged from the humanities and have a discursive emphasis; that is, they tend to view textuality as central, and seek to shift the rhetoric of representation from deficit to asset. Many claiming a DSE or CSE perspective emerged from within the field of mainstream special education (MSE), yet reject its medical model of sickness and cure. Like DS and CDS, they embrace a positive, empathic view of students with special needs as people with potential requiring knowledgeable and deliberate cultivation. We enter this discussion from disparate research programs that have led to concerns for how people of bodily, cognitive, and neurological difference become viewed as lesser in human value. ← 1 | 2 →
We next review how we arrived from outside these established fields to find ourselves working within their general outlines. We provide this narrative to establish our own qualifications for contributing to a body of work with which we are not normally associated, yet which has proven compatible for the goals we have developed for making society and schools more humane and attentive to human diversity.
Our Pathways to the Field
Our pathways have been long and perhaps indirect. We began to develop our individual lines of inquiry before we ever knew one another or began to meet to discuss the overlap across our work.
Kyunghwa Lee and Joseph Tobin became colleagues in The University of Georgia’s Department of Educational Theory and Practice in 2011, when Joe accepted a position as The Elizabeth Garrard Hall Professor of Early Childhood Education and relocated from Arizona State University. Through different channels, Peter Smagorinsky of the UGA Department of Language and Literacy Education became friends with each and learned that they had developed shared interests that might overlap with his. Our various conversations led us to begin to meet to discuss what we might have in common and how we could work together to advance our individual and collective understandings. We thus began inductively, talking about relationships across our work and that of our colleagues, rather than beginning by reading DS, CDS, DSE, and CSE and forming an affiliation deductively. Although we were aware of these fields in part, we had no intention initially of aligning our work with them. We thus began as outsiders who found common ground with extant work, even as we felt that our precise niche might require some adjustment and refinement.
Kyunghwa, a South Korean native, had been studying attention-deficit hyperactive disorder (ADHD) and had become interested in how behavior classified as ADHD could be defined differently in diverse cultural and historical contexts. She was particularly interested in examining how ADHD might reflect the middle-class, European American value on the individual, as is typical of mainstream special education’s general Piagetian approach (Lee, 2008, 2010; Lee & Neuharth-Pritchett, 2008; Lee & Walsh, 2001). She found cultural psychology (Cole, 1996) to be a useful framework for adopting a perspective grounded in understanding cognition by first attending to the social surroundings of individuals, which led her to read Vygotsky and related sociocultural research. Paying attention to culture in general and today’s U.S. early schooling in particular, she embraced the notion of social constructivism, which enabled her to articulate ← 2 | 3 → how the designation of one as disabled can go from a social construction to a cultural fact.
As a visitor to Joe Tobin’s doctoral seminar on poststructuralism, she began to see ways of applying ideas of French sociologists and philosophers (e.g., Marcel Mauss, Michel Foucault) to investigate how ADHD reflects techniques of the body, a perspective known as biopolitics. She thus shares much with DS/CDS and DSE/CSE and their poststructural orientation. Her interest in social science applications through the sociocultural tradition and its materialist foundation, and her work as a teacher educator rather than a special education specialist, led her to broaden her interest in classification to classrooms in general, rather than classrooms designated as either special education or enrolling special education students along with unclassified students.
Peter’s pathway to our collaborative was less direct. He began as a high school English/Language Arts teacher. His graduate studies were focused on researching ways of teaching writing, informed at the time by cognitive psychology. After graduating in 1989 and beginning his own university career, he gravitated quickly to the cultural-historical psychology developed by Vygotsky (1987) as a way to explain cultural variation in students’ differential performances in school. This work sustained him for two decades of research in literacy and teacher education, until a personal and family crisis led to an understanding of his own, along with his daughter’s, location on the Asperger’s syndrome spectrum, with chronic anxiety, obsessive compulsiveness, and mild Tourette’s syndrome also part of their makeup.
Beginning with an autoethnographic exploration of his family life (Smagorinsky, 2011), he read Vygotsky’s (1993) volume on defectology, a much-neglected work within Vygotsky’s oeuvre. This unfortunately-named field was founded to address the cognitively and physically impaired population in Eastern Europe following nearly two decades of revolution and warfare that produced the Soviet Union in 1922 (see Smagorinsky, 2012, this volume; and Smagorinsky, Cole, & Braga, 2017, for more specific attention to the role of human diversity in cultural-historical psychology derived from Vygotsky). These investigations led him to think about neurodiversity (Fenton & Krahn, 2007), an emerging field that seeks to eradicate the shame and stigma associated with neurology-based conditions such as being on the autism spectrum (Cook & Smagorinsky, 2014; Smagorinsky, 2016). His background thus shared Kyunghwa’s attention to cultural psychology, yet from a different perspective and in relation to different sorts of educational and societal challenges. Rather than emerging from any “disability” field, he located himself within Vygotsky’s cultural-historical approach, with extrapolations from Vygotsky’s defectological writing—concerned primarily with blind, deaf, maimed, and cognitively impaired children injured between World War I and the establishment of the Soviet Union—to neurodiversity as presented via autism-spectrum personalities. ← 3 | 4 →
Joe came to our collaboration through his long-time immersion in studies of preschools across international contexts (Japan, China, France, the U.S.), grounding his work in the fields of anthropology, sociology, and child development (Hayashi & Tobin, 2014; Tobin & Hayashi, 2015; Tobin, Hsueh, & Karasawa, 2009; Tobin, Wu, & Davidson, 1989). This approach of doing comparative studies in culturally varied national contexts of a single aspect of schooling—preschool socialization and education—led to an appreciation for the ways in which national cultures socialize children and prepare them differentially to participate in both school and society. His work in these settings brought him into contact with a number of deaf children and adults, leading to an interest in how deafness and other types of difference are constructed and addressed in educational settings (Hayashi & Tobin, 2014; Tobin & Hayashi, 2015). With a background in poststructuralism, anthropology, and psychoanalysis, and with experience doing research in varying cultures and national contexts, he approaches people who identify themselves, or are labeled by others, as different with the intention of understanding life from their perspective.
He further locates his understanding of the educational needs of Deaf and other people exhibiting difference within the affordances and constraints of the larger society in which they live. Joe values both the discursive emphasis of DS/CDS and its poststructural foundation, and the educational mission of DSE/CSE, particularly as it expands beyond its differences with MSE proponents and becomes engaged with the broader challenges of preparing teachers to work with a full range of children across the curriculum (see Dudley-Marling & Burns, 2014; Gabel & Connor, 2014). He is especially interested in work on constructions of ability/disability conducted outside the North American/Anglophone cultural/political context, a broadening of focus encouraged by many scholars in DS/CDS and DSE/CSE. He thus saw our work group as a way to conceive of an alternative that incorporated MSE’s attention to addressing the needs of learners classified as disabled, without compromising their social status by treating them according to a “pathology paradigm” (Walker, 2012) that assumes their deficiency.
Our conversations led us to set up a seminar series in the 2013–2014 academic year in which we met weekly to discuss shared readings among ourselves and with a group of graduate students, including some who were deaf or had deaf parents. Further, with both Kyunghwa and Peter acknowledging their own experiences with chronic anxiety, and Peter additionally having begun to write about Asperger’s syndrome and obsessive-compulsiveness in his family and personal makeup, our meetings were especially attentive to discussing what are considered disabilities in nonpathologizing terms. This value took on an imperative as the group included deaf participants and sign-language interpreters, demanding attention to ← 4 | 5 → the diverse needs of those attending the sessions. This book embodies and extends those discussions.
Our approach thus springs from a seminar series, but is rooted in the various interests and experiences that brought our work together. We enter from different research programs and thus see our work as interdisciplinary yet well-integrated. Where we have arrived is consistent with the values of DS/CDS and DSE/CSE, yet informed by research programs not often associated with the established scholarship driving these areas of inquiry. Like these scholars, we challenge assumptions that view people classified as disabled or disordered to be “abnormal,” that isolate attention to their difference solely in the individual, that treat areas of difference as matters of deficiency, and that separate people considered disabled or disordered from the mainstream and treat their points of difference pathologically. Each of us brought long disciplinary histories to these meetings that needed to be discussed and negotiated over time. Rather, then, than viewing our seminar series as a distinctive beginning, we see it as the convergence of ideas that were under development long before we entered the conversation, and that we hope to develop through this volume and beyond.
Epistemological and Theoretical Foundations
Within our purview we include attention to differences that are cognitive (e.g., “learning disabilities”), neurodivergent (e.g., Asperger’s syndrome and ADHD), and physical (e.g., deafness). Our approach, rather than constructing people in terms of deficits, characterizes people with such classifications in terms of strengths rather than disabilities, and considers the social environments in which they live and learn as potentially either unresponsive and constraining or as supportive and enabling. In some cases, this environment is local, as in the immediate social surroundings of classrooms; in others the environment is more expansive and includes the policy context of overclassification of disability based on such factors as race and ethnicity. In other words, our approach reverses the customary frame of reference and shifts attention from the “disabled” and “disordered” individual to the disabling environment.
We view ourselves as working within the sociocultural field that has contributed to the “social turn” that has directed and shaped much scholarship in the last few decades. Rather than promoting the tribalism that institutes a dominant culture’s ways and means as ideal, this work seeks to understand how different cultural practices serve to promote different societal ends. From this perspective, societal ← 5 | 6 → norms are contested, and the whole spectrum of humanity is viewed as having potential for producing satisfying participation in a culture’s practices. We use the term “spectrum” not to denote a linear order, but more as a non-hierarchical swirl of possibilities (see Burgess, 2016). Rather than going from left-to-right from severely affected to normal or ideal, the notion of a spectrum considers how one’s makeup follows a complex, multi-faceted organization.
Our approach has roots in a Marxist perspective that is oriented to understanding the social environment of human development, one that is mediated by tools and signs. As school-based researchers and teacher educators, we are concerned with the material conditions of classrooms and other school spaces and seek to construct them to promote more inclusive possibilities than are typically available. This interest is realized in architectural modifications such as those available through Universal Design and its antecedents (e.g., Goldsmith, 1963, 1997), which have produced large and expensive affordances such as accessibility ramps, and small adaptations such as large, flat light switches replacing small toggle switches. Such features allow the greatest number of people to navigate the physical environment. This concept has extended into the Design for All and Barrier-Free movements that push manufactures to create adaptive and assistive technology such as computer options, wireless control devices, Velcro adhesion, electric toothbrushes, and any other products that bring greater agency and autonomy to those for whom conventional environments present challenges. The concept of Universal Design has applications beyond architectural considerations, in the way social spaces including classrooms can be organized to facilitate accessibility and inclusivity.
The goal of constructing material settings that enable greater social value and participation fits well with our approach. Our hope is that the potential of those classified as disabled and disordered may be more fully realized in spite of the problem that conventional schooling has been designed to accommodate the normate (Garland-Thomson, 1997)—the idealized able-bodied/minded person—much more than those who depart from its features. We thus share a rejection of the medical model of disability common in the diagnostic world. In that spirit, we avoid to the greatest extent possible terminology that pathologizes children and youth with disorders, disabilities, abnormalities, and other such terms. These terms are problematic and construct an ideological representation of deficit that positions people as socially inferior.
- ISBN (PDF)
- ISBN (ePUB)
- ISBN (Hardcover)
- ISBN (Hardcover)
- Publication date
- 2019 (April)
- New York, Bern, Berlin, Bruxelles, Oxford, Wien, 2019. VI, 222 pp., 8 b/w ill., 3 tables