Enacting Change from Within

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Acknowledgments

The idea for this book grew out of a special issue of RPSD (Research and Practice for Persons with Severe Handicaps), a journal published by TASH—an organization known for its commitment to supporting inclusive education and community living for all people with disabilities, especially those most at risk for marginalization and segregation. We wish to thank Phil Ferguson for his role in that original special issue and for getting us talking about the important question of how disability studies informs, interacts with and supports the work of inclusive educators. Thank you also to Chris Myers at Peter Lang Publishing for guiding us through this process and Susan Gabel and Scot Danforth for supporting our idea for this book from the beginning and providing us with invaluable feedback. We would like to express our gratitude to our respective institutions of higher education, Syracuse University and Trinity Washington University, for the support in completing this book. Lastly, we would like to express thanks to our families for cheering us on and being understanding of deadlines and long work hours. We know that nothing is possible without your love, support and patience.

To Ryan, Alani and Lyla—M.C.
To John, Lauren and Ben—C.A.
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Foreword: How TO Have Hope While Waiting FOR THE Disability Revolution

SCOT DANFORTH

Sometimes the Disability Rights Movement has the dynamite charge of a revolution. For example, on April 5, 1977, a group of over one hundred disability activists led by Judy Heumann took over the San Francisco Department of Housing, Education, and Welfare (HEW) building. HEW Secretary Joseph Califano refused to issue the necessary regulations to enact Section 504 of the Rehabilitation Act of 1973, a law that had been passed almost four years earlier (Fleischer & Zames, 2011; Scotch, 2001).

Section 504 truly was a revolutionary law, a sweeping national disability anti-discrimination law that impacted all organizations and institutions receiving any kind of federal funding. It became the landmark prelude to the 1990 Americans with Disabilities Act that extended the reach of federal anti-bias law to include the private sector.

Supported and aided by the widest possible variety of American cultural and political institutions, including McDonald’s restaurants, the California Department of Health Services, the Delancy House drug treatment program, United Cerebral Palsy, local gay activists, members of the United States Congress, Easter Seals, Safeway supermarkets, churches and synagogues, and the Black Panthers, the protesters occupied the federal building for 25 straight days. It was the longest nonviolent occupation of a federal building in American history (Fleischer & Zames, 2011; Shapiro, 1994).

On April 28, 1977, Secretary Joseph Califano yielded. He signed the regulations for Section 504, thereby enacting the law. American Coalition of Citizens ← ix | x → with Disabilities (ACCD) leader and special education professor Frank Bowe explained the motivation that drove the protestors to victory in these words.

People think that revolutions begin with injustices. They don’t. A revolution begins with hope. … (T)he reason disabled people came together and demonstrated as they did in the Spring of that year was because they had hope. (Fleischer & Zames, 2011, p. 55, italics original)

Educators who are devoted to the ethical mission of inclusive education often view their work as an important strand of the larger Disability Rights Movement (Danforth, 2014). If we live long enough to witness the widespread, across-the-nation development of what Dianne Ferguson (1995, p. 286) has called “genuinely inclusive schools,” that achievement will perhaps stand equal to the 504 victory won by the San Francisco 504 protestors of Spring, 1977.

But…most days do not involve dramatic, enormous victories. What does a progressive, inclusion-minded teacher or teacher educator do in the meantime? Between today and the day of the inclusive education revolution, there must be something constructive and hopeful that an educator can do.

That is exactly what this book is all about. In the meantime, in the too-long lull before the revolution, there are numerous opportunities for teachers, school leaders, and teacher educators to push the disability rights agenda forward. A tremendous field of scholarship called Disability Studies (DS) has been developed as the intellectual arm of the Disability Rights Movement. Educational researchers and practitioners have spent the past 15 years fashioning the sub-field of Disability Studies in Education (DSE), a version of DS insight, theory, knowledge, and provocation geared specifically to the interests and needs of educators and students. This book asks, how can all this DSE knowledge and wisdom be applied to the daily issues and challenges faced by teachers working in the thousands of public schools that are less than genuinely inclusive? How can teachers apply what DSE scholars have learned to their daily practice even if they do not work in an inclusive school?

John Dewey worked his entire life for educational and political reform in the United States, but he rarely envisioned dramatic social change occurring in revolutionary fashion. He pointed out that profound change rarely happens in uplifting moments of victory like the conclusion of the 504 protests. It more frequently occurs through seemingly small, everyday shifts in the landscape of thought and action. For this reason, Dewey touted not educational revolution but the moral imagination of meliorism. Dewey (1920/1976) wrote, “Meliorism is the belief that the specific conditions that exist at one moment, be they comparatively bad or comparatively good, in any event can be bettered.” Charting a pragmatic path between the absolute poles of optimism and pessimism, Dewey envisioned ← x | xi → opportunities for social improvement—to take steps to allow lives to be better—within the limitations of the current situation.

This ambitious book carves out many paths of melioristic possibility, of the utilization of the social justice literature of DS and DSE by educators working in often boxed-in and frustrating grounds of American schooling. This book actively creates new opportunities for social progress in a pre-revolutionary context. Moving in small steps, side steps, half hops, and occasional pirouettes, this book creatively and doggedly pushes public schools forward toward practices that more fully accept and value all students. It offers a useful, hope-filled handbook to guide educators who simply can’t sit on their hands and wait for the revolution. And maybe, just maybe, it moves schools, classrooms, teachers, and children closer to that triumphant day.

REFERENCES

Danforth, S. (2014) Becoming a great inclusive educator. New York: Peter Lang.

Dewey, J. (1920/1976) Reconstruction in philosophy. In Boydston, J. A. (ed.) John Dewey: The middle works, 1899–1924, Volume 13, Carbondale, IL: Southern Illinois University Press, pp. 181–182.

Ferguson, D. L. (1995). The real challenge of inclusion: Confessions of a ‘rabid inclusionist’. Phi Delta Kappan 77(4), 281–287.

Fleischer, D. Z. & Zames, F. (2011) The disability rights movement: From charity to confrontation (updated edition). Philadelphia, PA: Temple University Press.

Scotch, R. K. (2001) From good will to civil rights: Transforming federal disability policy. Philadelphia, PA: Temple University Press.

Shapiro, J. P. (1994) No pity: people with disabilities forging a new civil rights movement. New York: Times Books. ← xi | xii →

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CHAPTER ONE

Disability Studies AND THE “Work” OF Educators

MEGHAN COSIER AND CHRISTINE ASHBY

The Experience of an “Inclusive-Minded” Special Educator

It was the first day of school in Edgewood, New York, and new special education teacher Kate Littleton waited in her classroom for the arrival of her students. As she moved around the room straightening books and organizing boxes of materials, she worked to quell the butterflies in her stomach. Part of this nervous energy was just first-day-of-school jitters and part stemmed from the fact that Ms. Littleton was feeling a bit out of her element. Despite completing a program in inclusive elementary and special education and seeking inclusive teaching opportunities, she accepted a position in this large urban elementary school as the lead teacher in a “special day class” (aka a self-contained classroom) for students considered to have “mild to moderate developmental disabilities.” As she put the finishing touches on a bulletin board, she thought back to the conversation she had with her principal when he offered her the job. When she raised concerns about the degree to which these students would be included with their general education peers, he assured her that the students could be “mainstreamed” out of the self-contained classroom for about an hour each afternoon and that she would have access to some of the same curricular materials that her general education colleagues were using. As Kate really loves teaching and needed a job, she accepted the position even though she was unsure how to maintain her identity as an inclusive educator in a self- contained classroom. She was hopeful that her commitment to educating all students in general education settings and her training in inclusive theories and ← 1 | 2 → practices would be enough to help her shift the structures of the school and create more inclusive opportunities for her students.

Six months later, Kate was struggling to realize her vision and maintain her enthusiasm and hope. She noticed how the structures of the class and special education service delivery model seemed to shape how others treated her students. She heard them described as “Ms. Littleton’s kids” and the “special day class kids.” They were not included on grade-level class lists or seated with their general education peers during special activities. She often had to beg teachers to “take” her students during mainstreaming time, assuring them that her students would not be too much trouble. Her students were often viewed as guests in the general education classrooms, and Kate herself felt like an outsider among her general education colleagues. Kate often had to remind the teachers that these students should have desks with their names on them and the same supplies (pencils, notebooks, textbooks, etc.) as the other students. In addition, teachers in other classrooms were identifying struggling students and labeling them as being “in need” of Kate’s self-contained classroom.

Kate became frustrated with what was happening at her school and tried to create opportunities for her students to become included more often in general education classrooms. Even when she made some progress with including one or two students, the system in place seemed set up to fail continually. For instance, Kate was able to work out a plan for one student, Erica, to be included for 3 hours instead of 1 in a general education classroom. Although this was a small victory, she had no success negotiating with teachers to include other students for such a long period of time. Since there was no administrative or building-wide support for changing any structures in order to create more access for students with disabilities, she often felt she was fighting a losing battle. Kate decided she needed to find a better way.

Kate went back to school and began to learn about this thing called “disability studies.” Despite being an educator for 6 years, with both a bachelor’s and master’s degree in education, she had never heard of disability studies (DS) before. Learning about DS changed her paradigm on special education and students with disabilities in schools. She learned about the social, political, and economic factors that influenced which students were considered disabled and nondisabled. She learned about the oppressive nature of segregated education and the deeply entrenched assumptions about potential and competence inherent in our educational sorting systems. She learned about discourses of power in school that reify normative assumptions of who can benefit from education and whose inclusion and participation is conditional. It’s almost as if Kate learned a “new language” with which to describe why things in her school needed to be changed. While not a panacea, disability studies can provide an avenue and tools not only for Kate ← 2 | 3 → to clearly articulate the need for change but to elicit real and lasting change in schools.

TRADITIONAL STRUCTURES OF SPECIAL EDUCATION: MEDICAL MODEL

The story above mirrors those of many teachers in today’s schools. Many novice teachers enter the field of education full of optimism and excitement but find themselves unprepared for the challenges of navigating the complicated dual system of education. They struggle to work within a system that serves to perpetuate inequality, meeting the directives of their districts and state mandates while remaining true to a more holistic and humanistic understanding of students. They notice “problems” with the current systems of supporting and educating students with disabilities but do not quite have the tools, resources, or language to enact real and lasting changes to current policies and practices. They feel stymied by the pressures of new accountability systems that seem to further challenge moves toward greater inclusion. This is where disability studies comes in. This framework can be a powerful tool in transforming how educators think about working with students with disabilities in schools.

Understanding the role of DS as one tool in addressing educational inequity requires examining the current landscape for supporting students with disabilities from diverse backgrounds in the U.S. and abroad. The structures of special education in the twenty-first century still start with the assumption of two separate systems, one for students with disabilities and one for everyone else. Grounded in the legislation of the Individuals with Disabilities in Education Act (IDEA), the rights and needs of students with disabilities are protected through “special” programming and separate educational systems. Rather than requiring that students with disabilities be served in general education classes with additional supports and services, IDEA mandates education in the least restrictive environment, which keeps the door open for wide and ambiguous interpretation, leaving many students excluded from mainstream public education and grade-level curricula. While there has been a continued move toward greater inclusive opportunities (U.S. Department of Education, 2014), access to general education is still highly dependent on factors such as geography, label, socioeconomic status, race, and performance status of the district (Kurth, 2014).

The continued existence of a continuum of special education services ensures that there will always be some students excluded from the mainstream of public education, some students deemed to need those special places, special programs, and specially certified teachers. Teachers are often trained separately in pre-service ← 3 | 4 → teacher preparation programs; the “special educators” and “general educators” in training may take few (if any) courses together. Thus, these teachers are entering a workplace where a very distinct disciplinary divide persists. There is a pervasive assumption that “special” kids belong to “special” teachers, and “normal” kids belong to “normal” teachers. Inclusive-minded teachers may be tasked not only with operationalizing more access to general education but also with changing assumptions about the possibilities for teaching (and sharing ownership of) all students.

Along with this disciplinary divide, there may be a significant divide between a teacher’s views on disability and the policies and practices of the school, particularly in this era of greater standardization and teacher and student accountability. Inclusive-minded teachers must navigate this rift carefully. For instance, even when teachers do not agree with the positivist and medicalized labeling of students, the Individuals with Disabilities Education Act (2004) requires an educational label (e.g., specific learning disability, autism, orthopedic impairment) in order for students to qualify for needed services and supports. This is one example of a “necessary evil” in the field of special education and one quandary that many special educators and administrators face when working in schools in the U.S. and abroad. Even if teachers reject the notion of educational labels and the positivistic assessments required to earn such labels, without those, no student can receive special education services. In other words, whether teachers agree with the system in place or not, they still have to work within it.

Teachers may encounter practices and policies that counter an inclusive-minded philosophy in a number of ways at various levels (e.g., teachers, classrooms, school, district, etc.). These barriers can range from the format of the individualized education program (IEP) to identification practices that disproportionately impact students of color to the professional development offered to teachers at the school. The first step for educators committed to more socially just schools and classrooms is simply recognizing these patterns of oppression. The next step is using tools to support changing these systems in ways that support more access for all students.

Many teachers and future teachers are looking for tools and strategies to effect change for students while working within deeply entrenched systems. They ask questions including, “How can I value and support the participation of all students and not rely on deficit-based assumptions?” “How can I meet the expectations of my profession and the needs of my students in humanistic and strength-based ways?” and “How can I work with other professionals to create more inclusive opportunities for all students?” “Arming” teachers with these new “ways of knowing” disability can impact their readiness to critically analyze issues related to students with disabilities and then subsequently go about making meaningful changes in policy and practice. ← 4 | 5 →

So What Is This Thing Called Disability Studies?

Traditional special education is grounded in the assumption of identifiable and meaningful differences. It is a field with deep roots in behaviorism, positivism, psychology, and medicine. The purpose of education becomes remediation of identified deficits, with a goal of moving the person toward more normative ways of being. Disability studies (DS) conversely views disability as a social, political, and cultural phenomenon (Goodley, 2012). Just as “disability” itself stretches across a wide range of human experiences, DS is a field that stretches across a wide range of academic disciplines including sociology, art, media, history, law, economics, and medicine (Linton, 1998). Rather than being something inherent to the person, “disability” is directly related to how it is represented and defined in current society. As Wendell (1996) explains, “disability” is influenced by social factors because disability is related to an individual’s “physical, social, and cultural environment” (p. 58). The definition of disability is not static but rather influenced by how it is represented by current cultural practices and norms (Garland-Thomson, 1997). Wendell suggests that “societies that are physically constructed and socially organized with the unacknowledged assumption that everyone is healthy, non- disabled, young but adult, shaped according to cultural Ideals, and, often, male, create a great deal of disability through sheer neglect of what most people need in order to participate fully in them” (p. 59). Thus, from a disability studies lens, disability and impairment are viewed as two distinct entities; an impairment represents a person’s difference, such as a person’s inability to hear, while disability elucidates the barriers society places on such a person. In other words, DS emphasizes social barriers rather than individual impairments. If all people in society communicate via sign language in the same way as the person with the hearing impairment, then the person would not be considered disabled. It is not until society places barriers in front of that person (e.g., people communicating verbally and not through use of sign language) that the person becomes disabled. Therefore, the focus is not on “fixing” the person’s ears so that he or she may hear like others but rather on recognizing and removing the barriers and creating equitable access. Thus, DS does not view a person’s disability as something that needs to be fixed or cured. Rather, the focus shifts to removing the barriers that serve to “create” the disability.

For students in public schools, this means focusing on systems, structures, and classroom practices rather than directing attention at fixing the “broken child.” In addition to the disability/impairment dichotomy described above, DS scholars often stress that DS is not rehabilitation, special education, or any other field involved with “fixing” or “curing” a disability (Linton, 1998). This focus on a fix or cure is widely known in the field as the “medical model” of disability (Linton, 1998; Valle & Connor, 2011). To illustrate this point, Valle and Connor (2011) describe how schools often view disability in medical terms that ultimately ← 5 | 6 → focus on a cure. First, a “problem” is identified in the student. Then “professionals” diagnose the problem. Lastly, they develop a “treatment” to “fix” that problem. Special education has deep roots in the medical model, and current practices of assessment, identification, and treatment necessitate specialized staff and services. The problem is individual, and the solutions tend to be as well. Conversely, the social model and other culturally based models such as the minority model address disability from a more global perspective. There is a recognition of disability as a natural part of human variation that necessitates both individualized supports and systematic approaches and a recognition of the discursive power of identification.

Despite a general acceptance of the medical model and social model paradigms in the field, the social model has been critiqued extensively by a number of scholars in the field of disability studies, as well as in the field of special education. In their article on the “antisocial model of disability,” Dewsbury and colleagues (2004) suggested that the social model fails to provide a complete picture of the lived or embodied experience of disability and that we should be leery of attempting to completely replace the medical model with the social model. Shakespeare (2013) supports this assertion when stating that the social model relies so heavily on the sociopolitical construction of disability, that it “risks implying that impairment is not a problem” (p. 270). Shakespeare continues his critique when stating that the distinction between the medical and social models is not always as clear as scholars and activists suggest and that in everyday life, it can be difficult to distinguish between impairment and disability. He provides an example of a person with multiple sclerosis who is depressed and cites the difficulty of distinguishing between disability and impairment in such a case. Further, some disability studies scholars have stressed that some advances in medicine and rehabilitation have improved the lives of individuals with disabilities and, therefore, an outright and full rejection of the model is unwarranted (Gabel & Peters, 2004).

Who Defines Disability in the Social Model? Whose Voice Is Heard?

Humphrey (2000) suggests that the social model privileges some “impaired identities” over others. She suggests that “obvious” or physical impairments have taken center stage in the social model discussion and that “invisible” disabilities such as intellectual impairment or chronic illness have been discussed much less often in relation to the social model. Therefore, if we are to construct meaning of disability through lived experience, as the social model suggests, then we are hearing about the lived experiences of only some individuals with disabilities (e.g., individuals with physical disabilities), while other individuals with disabilities are silenced.

In addition to critique of the definition of the social model and its role in defining disability, there is a question of how such a model should be implemented ← 6 | 7 → in policy and research. A significant body of literature critiques the practicality and applicability of such an approach (Dewsbury et al., 2004; Humphrey, 2000; Shakespeare, 2010). The social model suggests that if all barriers are removed, a person no longer has a disability, just an impairment. A common example of such a “barrier-free utopia” is a community designed for wheelchair users that is completely accessible (Shakespeare, 2010). Such a barrier-free environment for all types of disabilities would be nearly impossible to operationalize. This critique holds true when the social model is applied to education (special education in particular). Anastasiou and Kauffman (2011), for example, suggest that it is impossible to create a universally accessible general education classroom environment, as the supports beneficial for one person may actually hinder another’s performance in the space, and thus creation of “special” environments may be necessary for students with certain disabilities. In the field of special education in particular, Anastasiou and Kauffman (2011) suggest a number of limitations to the social model, including offering the accounts of only a privileged few, mostly with physical disabilities, and unjustly characterizing segregation as oppressive to students with disabilities.

The “medical model” view of disability, supported by Anastasiou and Kauffman, is one that dominates current school culture and practices surrounding students labeled with disabilities. This model runs contradictory to notions of “disability” represented in DS, which focuses on the social model of disability described previously. Despite a divide in some viewpoints, there are many ways that teacher education and the field of disability studies can work together to improve education for students with and without disabilities. This is evidenced by the emergence of disability studies in education (DSE), which applies a DS framework specifically to education-related issues.

DISABILITY STUDIES IN EDUCATION

Disability studies in education (DSE) is a growing interdisciplinary field that focuses on how disability and difference are addressed in schools while situating disability within a social context (AERA DSE SIG, 2007). DSE seeks to “promote the understanding of disability from a social model perspective” and to “challenge social, medical, and psychological models of disability as they relate to education” (AERA DSE SIG, 2007). DSE highlights how current “medical” representations and views of disability in schools often act as a way to “other” and/or oppress individuals with disabilities (Goodley, 2012). More importantly, DSE provides a framework for educators, parents, and other stakeholders to actively critique and change oppressive practices currently taking place in schools across the U.S. and abroad. ← 7 | 8 →

Disability studies in education grew out of the larger field of disability studies, and it essentially applies a DS framework to the field of education (Ferguson & Nusbaum, 2012). DSE scholars have approached a number of areas in special education including the relationships between labeling and placement (Baker, 2002) and race, language, and culture (Ferri & Connor, 2005). An example of a DSE view of special education and dis/ability in schools is Ferri and Connor’s (2005) analysis of current special education policy and the impact such policy has had on the resegregation of the public schools in the United States. Baglieri and Knopf (2004) also provide an example of the application of DSE perspective to special education when they argue that because DSE sees differences as natural and ordinary, it serves as a solid foundation for inclusive education in schools.

Teachers and other stakeholders in the field may use DSE as a framework for transformation. For instance, a teacher may notice that his colleagues are making judgments about students based on their disability labels or solely identifying students based on their disability labels. For example, both of us as teachers have heard our colleagues say things about students such as, “That’s my autistic student, he doesn’t really understand what is going on in the classroom, so he shouldn’t be in general education,” or, “That’s my intellectually disabled student, she’s in a self-contained classroom because she won’t ‘get’ anything from a regular classroom.” The social and medical model framework of DSE allows the teacher to speak to her colleagues about the social construction of these disability labels. Furthermore, the teacher can speak to her colleagues about the right to access to general education curriculum and peers and the oppressive nature and history of segregating individuals with disabilities.