disability_studies.docxDisability Studies: What Is It and
What Difference Does It Make?
Philip M. Ferguson
Chapman University
Emily Nusbaum
Colorado University Colorado Springs
The academic field of disability studies has expanded rapidly over the last two decades or so. With that expansion has also come some growing ambiguity about exactly what is meant by the term "disability studies." This article reviews the history and evolution of disability studies as an interdisciplinary approach to research and scholarship. While acknowledging the broad range of interests and approaches that can fall under the umbrella of the "disability studies" label, we argue that it may be useful to present a set of core themes or beliefs that seem central to disability studies as a field if it is to fulfill its promise as a truly different way of exploring the meanings of disability in society. Finally, we argue that disability studies should be of special interest to members of TASH and others with particular interest in the lives of people with significant intellectual and developmental disabilities.DESCRIPTORS: disability studies, social model of disability, inclusion, value-based research Over the last decade or so, the term "disability studies" has become a familiar usage throughout all areas of inqtiiry and scholarship involved in the study of issues affecting people with disabilities. Yet, the question arises as to whether the writing and research emerging from this still new and evolving area of study have any special relevance to those whose strongest interests are improving the lives of individuals with the most significant intellectual and developmental disabilities and their families. This article—as well as the others in this special issue—tries to demonstrate why that question should be answer redin the affirmative. The purpose, then, of this article is threefold. First, we provide a brief history of the emergence and evolution of the broad range of scholarship and inquiry that falls under the field called "disability studies." Second,we identify and briefly discuss what we see as at least some of the core concepts that underlie the relatively new field of study. Finally, we argue that, as a field of study, disability studies has particular salience for those interested in the development of research and policy in support of people with significant intellectual and developmental disabilities. Certainly, if one goes simply by frequency of usage, the practice of "disability studies" has gained ample currency within academic settings of the humanities and social sciences (Cushing & Stnith, 2009; Taylor & ZubalRuggieri,2009). In such a context, disability studies is often compared with similar approaches to human difference that have a somewhat longer history, such as Gender Studies and Race/Ethnicity Studies. In its broadest terms,then, disability studies might initially portray itself as the interdisciplinary study and representation of the concepts,cultures, and personal experiences of disability in all its variations. Equally important, of course, is the implication that just as we have come to understand race and gender as complicated and shifting mixtures of the physical and the cultural—the personal and the public—so must we place disability and impairment within a social and historical context. Yet, at the same time that the term "disability studies"has come into more and more cotnmon usage, it has also become less clear as to what exactly the term refers. As the introduction to this special issue outlines, the meaning of "disability studies" seems to many to have become more diffuse just as the term's adoption has become more popular. Others may feel confident that they understand well enough what the term means but that it ultimately has little relevance to the more urgent questions of reforming policies and improving practices in all of the contexts that affect the lives of people with intellectual disabilities and their families. This analysis explores both of these issues. We describe our understanding of what is, admittedly, a diverse and changing field. More importantly, we argue that the teaching and research emerging from this field do, indeed, have important implications for people with the most significant disabilities and the professionals trying to provide them with support.
Some History It is probably impossible to pinpoint an exact date for the beginning of disability studies as a distinct field of academic scholarship.^ The Society for Disability. Studies—the oldest academic organization explicitly dedicated to this area—traces its beginning to 1982 (see the brief account at http;//www.disstudies.org/about/history).However, even before that date, there were isolated examples of individual researchers or even entire programs that helped create the foundations of this radically different approach to the study of both the concepts and the experiences of disability. Perhaps the simplest way to think of this emergence is to identify disability studies as the academic side of the disability rights movement. The political theorist Michael Walzer has succinctly characterized "social criticism" as "the educated cousin of the common complaint" (Walzer, 1987, p. 65) to make his argument that effective social theory must never move too far from the very real problems faced by everyday people. So, it should be with disability studies. Born of theprotests and growing self-advocacy of ordinary people in the 1970s (Shapiro, 1993), disability studies reflected the efforts of scholars with disabilities (and some nondisabled colleagues) to conceptualize and interpret the common complaints of people with disabilities and their fatnilies. What had been the sporadic and often unconnected work of isolated researchers and theorists began to coalesce around a set of core ideas and shared experiences. Fields within the social sciences were perhaps the earliest disciplines in the United States to present research that seemed to capture some of these new assumptions about the cultural meatiing of disability. As early as the 1960s, sociologists such as Erving Goffman (1961, 1963) and anthropologists such as Robert Edgerton (1967) were using the social construct of stigma to explore the phenomenological and cultural experience of disability. In the 1970s and 80s, the medical sociologist Irving Zola illustrated how the study of disability could usefully employthe methods and concepts of the social sciences to place the personal experience of physical disability within a social context (Zala, 1982a, 1982b). In 1980, Zola began publishing a newsletter that was to become what is now the Disability Studies Quarterly, the oldest academic journal devoted specifically to works representing "the full range of methods, epistemologies, perspectives, and content" embraced by this interdisciplinary field of study. At Syracuse University, Burton Blatt recruited social scientists and policy analysts (e.g., Robert Bogdan, Steven Taylor, and Douglas Biklen) to blend vigorous advocacy with scholarly rigor in exposing the institutional abuses that were the daily experience of hundreds of thousands of people with intellectual disabilities (Biklen & Bogdan, 1977; Bogdan & Biklen, 1977; Bogdan & Taylor, 1976; Taylor, 2006). In 1982, four young sociologists^ from various parts of the country came together at a conference of the Western Social Science Association to form a special section for the "Study of Chronic IUness, Impairment, and Disability." By 1986, the group became a separate orgatiization called the Society for Disability Studies (SDS), soon having separate conferences and publishing proceedings
(e.g., Kiger & Hey, 1989). As noted before, since these early rumblings in the late 1970s and 1980s, disability studies has grown exponentially At least in its North American context, disability studies has moved well beyond its origins in the social sciences, developing entire subcategories of work in history (e.g., Baynton, 2001; Carey, 2009; Kudlick, 2003; Longmore & Umansky, 2001), humanities (Davis, 2010; Garland-Thomson, 2009; MitcheU & Snyder, 2000; Siebers, 2008; Snyder, Bmeggemann, & Garland-Thomson, 2002), and the arts (Cmtchfield & Epstein, 2000; Hevey, 1992; Lubet, 2010; Sandahl & Auslander, 2005). In both North America and Etirope, work has emerged in interdisciplinary fields such as feminism (Hillyer, 1993; Thomas, 1999), bioethics (Kittay & Carlson, 2010), and Queer Studies (McRuer, 2006). Powerful memoirs reflecting on the meanings and experiences of disability from a personal perspective served as critical testimony to the generations of voices that had been largely silenced or ignored both in the sciences and the humanities (e.g., Ferguson & Asch, 1988; Finger, 2006; Fries, 1997; Johnson, 2005; Linton, 2006; Sherry, 2006). Equally important for our purposes here, groups of researchers within the traditional fields related to disability began to identify their work as part of disability studies. The label of "disability studies in education" became used by sotne to denote a newly critical stance toward the traditional assumptions of the more familiar "special education" (Connor, Gabel, Gallagher, & Morton, 2008; Danforth & Gabel, 2006; Gabel, 2005). Psychologists were challenged to reconsider "the relationship between disability studies and psychology in ways that contribute to the emancipation - rather than the exclusion - of disabled people" (Goodley & Lawthom, 2006, p. xvü). Policy analysts and human service professionals began to talk about how a newly theorized understanding of disability could change approaches to both policy and practice (Devlieger, Rusch, & Pfeiffer, 2003; O'Brien & Sullivan, 2005; Schriner, 2001). Out of all of this diverse scholarship, the description of disability studies adopted by the Society for Disability Studies comes perhaps as close as anything to an "official" definition of this new, interdisciplinary field of study: Disability studies recognizes that disability is a key aspect of human experience, and that disability has important political, social, and economic implications for society as a whole, including both disabled and nondisabled people. Through research, artistic production, teaching and activism, disability studies seeks to augment understanding of disability in all cultures and historical periods, to promote greater awareness of the experiences of disabled people, and to advocate for sodal change. (Society for Disability Studies, n.d.) Still, despite such attempts at official definitions, it is probably not surprising that a certain messiness came to characterize the usage of the term "disability studies." It became somewhat unclear whether disability studies could be framed as a coherent and definable, if mulfidisciplinary, field of academic endeavor. As more and more academic programs began to spring up using the label of disability studies, disagreements began to emerge about who could and could not make legitimate use of the term. A growing list of questions came to accompany almost any introductory discussion of this new approach. Did "real" disability studies have to be based in a nonclinical or applied setting (e.g., in the humanities or social sciences) or could certain programs in the rehabilitation sciences or in special education also lay claim to the term as well? Could it be used in a medical or health care setting of any kind or was that a contradictory juxtaposition of the medical and social models used to approach disability is drastically different ways? Was it an approach that worked for certain disability categories such as physical disabilities or deafness but not for others such as significant intellectual disabuifies (Anastasiou & Kauffman, 2011)? Did the field have any connection to actually improving the lives of children and adults with disabilities or was it just an over-theorized distracfion from the types of applied science needed to find out what works and what does not in the prevention, cure, or remediation of disabilities of all kinds? What was the role of people without disabilities in the doing of disability studies? The fact that these quesfions of use and definition arose, of course, was a marker of success and maturation of the field itself. The term "disability studies" became contested precisely because of the power and insight found in the growing body of research and commentary that popularized the term.
What disability studies is not In her influential introduction to disability studies (Linton, 1998), Simi Linton has a chapter titled "Disability Studies/Not Disability Studies." In the chapter, she makes an extended argument for "setting off disability studies as a socio-political-cultural examination of disability from the interventionist approaches that characterize the dominant traditions in the study of disability" (p. 132). For Linton, it is important to have boundaries about how and where legitimate disabuity studies could be done. Despite that argument, as we have noted, the use of the term "disability studies" to characterize many new or restructured academic programs and research initiatives based within those "dominant traditions" (e.g. special educafion, health care, and human services) has confinued to grow over the last decade or so. While we worry that some uses of the term have more to do with image than substance, we also are reluctant to restrict the term to certain areas of knowledge and inquiry. A lively debate over definitions and appropriate usage can be a healthy activity that energizes the field. Nonetheless, it is easier in many ways to begin our discussion of where we locate the core of disabuity studies by making some broad comments about what disability studies is not—or at least should not be—rather than what it is. It should be clear from what we have said so far that the term "disability studies" should not be allowed to become little more than a synonym for special education or rehabilitation sciences. Nor should the term become interchangeable with research into community support and inclusive education (even though most scholars in disability studies would probably agree in general with these orientations). Finally, disability studies is not the same as disability rights, although again the two are closely related. Disability studies may be many things to many people, but if its full potenfial to reshape the way that society understands people with disabilities is to be realized, then it must avoid being seen as simply a new bottle for old wine. Some Core Concepts of Disability Studies If there are some elements or characteris: ics that we can say are arguably not part of what most scholars in the area would identify as central to disability studies as a field, then it is equally true that that there are other features that we would regard as core concepts. These are themes or contentions that we find so basic to thetheory and practice of disability studies as to be at the
heart of any discussions about its relevance for any specific program or content area. Our argument here again is not to set up some sort of purity test for what is—and should be—a messy, interdisciplinary field. However, the following five concepts strike us as a minimal set of arguments with which to put some flesh on to the bare bones of rhetoric about what is different and important about disability studies. Concept 1: The study of disability must be social Just as gender is more than chromosomes and race is more than skin color, disability is more than an individual impairment. This simple statement is one version of what is, perhaps, the one concept closely associated with disability studies that has gained the greatest familiarity and even acceptance within the academy: the so-called "social model" of disability. Usually contrasted with something called the "medical" or "deficit" model, the social model has become one of those umbrella terms—indeed, much like the term "disability studies" itself—that has a broad recognifion and tmderstanding, while also being constantly debated by those who find one or another of its usages problemafic (Anastasiou & Kauffman, 2011). Our purpose here is not to settle—or even enter into— those debates. Rather, it is to point to the concept as the single idea that most people would cite as one of themost iniluenfial contributions to the theorefical study of disability in the last 40 years. Even the World Health Organization (WHO) in its current version of the International Classification of Functioning, Disability and Disease
Disability Studies: What Is It? 73 (WHO, 2001) acknowledges the import
importance of this idea and tries to "merge" it witb the more traditional medical model. The WHO definition of this concept summarizes the most common understanding of the social model: Disability is not an attribute of an individual, but rather a complex collection of conditions, many of wbicb are created by the social environment. Hence the management of the problem requires social action, and it is the collective responsibility of society at large to make tbe changes necessary for full participation of people with disabilities in all areas of social Ufe. (WHO, 2001, p. 28) What the WHO definition leaves implied but unstated is tbat tbe concept of the social model requires not merely social "action" but social analysis as well. The importance of the social model as a core concept of disability studies is not only that disability is more than individual pathology and deficit but also that its meaning is more than a personal problem. Disability must be studied in its social, cultural, and historical context as much as tbe personal conditions of impairment and functioning must be studied in their medical and educational
contexts.This does not have to be an either-or proposition. Most scholars in disability studies readily acknowledge the personal reality of impairments. Studying tbe socialbi story of intellectual disability does not mean that the personal experience is irrelevant. Indeed, much recent writing has urged renewed attention to the "embodiment" of disability (Finger, 2006; Shakespeare, 2006; Siebers, 2008). Nor does the emphasis on the social model negate the importance of medical and educational research on diagnostics, assessments, treatments, and interventions. Even with these more traditional approaches to the health and education of individuals with specific impairments, however, disability studies can contribute a social perspective from which to view and interpret scienfific findings. Indeed, for most disability studies scholars, this is not really a choice. All research, all knowledge exists unavoidably in a cultural and historical context. The only choice is in how openly that context is acknowledged and explored. Concept 2: The study of disability must be foundational
It is certainly the case that scholars in disability studies argue that their approach to disability and impairment is fundamental to deepening our understanding of how that status is experienced in society. However, disability studies also makes the argument tbat perhaps the most important reason to explore the meaning(s) of disability is not to understand disability itself but to understand other categories of human difference. In other words, tbe study of disability (and the concept of "disability") is at the foundation of our understanding of the social construction of race, gender, class, and other ways in which we differentiate ourselves from one another. It is essential, in short, to our understanding of how we see ourselves as same and different (Devlieger et al., 2003). It would be difficult to find professional preparation programs these days in special education or rehabilitation sciences that did not pay some attention in their curriculum to issues of race, class, gender, and other social categories. Tbe issue of disproportional representation of racial minorities within at least some categories of special education has certainly received growing attention over the last several decades (Arfiles, 2003; Harry & Klingner, 2006; Losen & Orfield, 2002). Virtually every future special education teacher, rehabilitation therapist, or adult services professional at least learns the rhetoric—if not always the deeper convictions—of culture competence and reciprocity. However, the difference between this welcome growth of attention to cultural issues within applied disciplines and the concept of disability as foundational that is brought forth by disability studies remains important. Disability studies is arguing that the issue is more than the distortion of science by social intrusions of systemic injustices sucb as racism, sexism, and poverty. Throughout history, the label of "disability" has functioned as an accusation more often than an assessment. In a review of how discriminafion against African Americans and women has been justified at various times in American history, the historian Douglas Baynton makes this claim overt: "Not only has it been considered jusfifiable to treat disabled people unequally, but the concept of disability has been used to justify discriminafion against other groups by attributing disability to them" (Baynton, 2001, p. 33). In the opposition to suffrage and women's rights in tbe early part of the 20th century, male politicians and others would cite the feebleness and instability of women generally as reasons to "protect" them from the responsibilities of voting, running for political office,or learning a profession (Baynton, 2001, p. 42). The medicalized racism of the same era was used to bolster the rise of Jim Crow laws and policies in the South and antiMexican laws in the West (Molina, 2006). Tbe imagery of disabuity has always been used to symbolize the dangerous and inferior. The concept of disability is used to hide what scares us, to remove what repulses us, and to medicalize what shocks us. The logic was irrefutable. Disability was the ulfimate "other" (Kudlick, 2003). In many ways, disability continues, by definition, to be a lesser state of being that justifies paternalism at best and extermination at worst. To apply that label to the LGBT community, to the homeless poor, and to those who do not speak English is to justify the practices of exclusion and neglect that are still tacitly understood as a legitimate corollary of the disability status. In opposition,tbose being labeled often challenge the accuracy of the attribution but seldom challenge the logic behind the accusation. In discussions of current social issues such as the overrepresentation of certain racial groups 74 Ferguson and Nusbaum in special education, the problem is analyzed primarily as an instance of systemic racism without an equal review of the negative assumptions about disability that make the concept understandable as source of exclusion. Disability—and the concept of disability—must be part of the very foundation of attempts to understand what is different as well as what is normal. Concept 3: The study of disability must
be interdisciplinary If disability is social and foundational, then our efforts to understand the experience and concepts behind that status must cut across traditional academic disciplines. Disability studies demands that the study of disability be as broad as culture itself. We must draw upon the tools
and traditions of all our ways of knowing about the world. Again, in many ways, the best analogy here is to similar interdisciplinary fields such as women's studies or race and ethnic studies. Just as these more established fields have drawn upon the history and sociology of women and the concept of femininity or the cultural and literary representation of African Americans, so does disability studies look for ways to explore the meanings of disability as it emerges in aU of our in academic departments. In its early days, this core feature of disability studies was focused on the need to bring the study of disability into the arts and humanities, and areas of the social sciences other than psychology. In making that case, the impression was sometimes given that disability studies could only exist within these non-applied disciplines.Efforts to legitimize the study of disability outside of applied fields such as special education and social work, sometimes led to attempts to delegitimize the practice of disability studies within those same traditional fields. In part, this was an understandable response to the traditional domination of those traditional fields in the study of disability. Special education and rehabilitation sciences had been seen by many as "owning" the topic of disability in a way that disability studies scholars wantedto challenge. At the same time, many academics within the applied sciences associated with disability would often see calls for interdisciplinarity as meaning that general education experts should interact with special education experts. History, literature, philosophy, art, and other fields within the humanities are seen as supplemental interests to the main goal of learning how to teach and how to support individuals with disabilities. The worry, then, by some within the humanities and social sciences was that allowing the mantle of disability studies to be assumed by these same professional schools would coopt the truly reformative potential of this newly critical approach. Those worries remain, and the disciplinary tensions that accompany those concerns wiU also continue. At this point, we believe that truly interdisciplinary (and not just multidisciplinary) disability studies can only flourish if the orientation and insights it makes possible are available to all parts of the academy. Concept 4: The study of disability must be participatory.This concept is one that is probably famuiar and endorsed by virtually all members of TASH and other progressive disability research and advocacy organizations. Still, the call for increased participation and influence by people with disabilities and their families with what is taught and explored about disability is one that disability studies has greatly emphasized, if not originated. The call for participation, of course, is not just about what questions get asked, but about who gets to ask the questions (Ferguson, Ferguson, & Taylor, 1992). The point is not just to have new types of research and teaching about disability but that scholars with those disabilities
should be prominent among those doing that research and teaching. However, this concept becomes somewhat more contentious when taken beyond superficial rhetoric. What does "participation" truly mean in terms of scholarship? More specifically what might participation mean for people with intellectual disabilities (Docherty et al.,2005)? Should disability studies research always be action-oriented (as with Participatory Action Research) or can it sometimes be primarily analytical or historical in focus? Is "participation" enough, or does disability studies research have an obligation to be "emancipatory" in effect (Mercer, 2002; Seelman, 2001)? In part, this touches on one of the central tensions in disability studies scholarship: What is or should be the role of the non-disabled researcher/teacher within the field of disability studies (Barton, 1996)? Just as it would be odd if women's studies programs were led primarily by men or European Americans were the most prominent faces in African American scholarship, so it would be surprising only if those within disability studies took no notice of the disability status of those whose voices were most prominent. At the same time, the brief history of disability studies is full of examples of scholars without (visible) disabilities making significant contributions to the field. The principle of participation raises as many questions as it answers, but as long as people with disabilities remain underrepresented in our colleges, universities, and research institutions, then the issue must remain central to the field. Concept 5: The study of disability must be values-based This principle is also one that is familiar to the members of TASH. One of the changes that has occurred within the various domains of teaching and research is that the notion of values-based research has become widely accepted, even within the hardest of sciences. It is now standard practice to use and report social validity measures within traditionally quantitative and behavioralresearch (Wolf, 1978). Within disability studies, there have come more dramatic claims for advocacy as inseparable from progressive scholarship of any kind (Oliver, 1992, 1993). At either end of this spectrum Disability Studies: What Is It? 75 of research practice, the legitimacy of some consideration of ethical implications within all approaches to knowledge about people with disabilities is accepted by most scholars. As with the principle of participation, however, the emphasis on values-based research quickly becomes complicated. For many within disability studies, the overt valuesbase takes the form of significant critical analysis of traditional disability-oriented programs and professions. If "special education" and "rehabilitation" are not exactly "four-letter words," they are at least viewed skeptically by some as signifiers of a formal service system that is known mainly for its oppression and pathologization of children and adults with disabilities (Heshusius, 2004; Ware, 2005). For those living their professional Uves inthe midst of these systems, critical of the failures whilestriving for reform, such a blanket dismissal of the helping professions can seem dismissive of the real needs of real ndividuals for the sake of ideological purity. At the same time, the history of failed reforms and continued disempowerment of people with disabilities and their families by the health and education systems makes the prospects of decades more of such incremental change somewhat disheartening for many within disability studies. What Difference Does It Make?Learning how and why to "imagine
disability otherwise"We use this phrase, borrowed from Ware (2003), because it represents the possibility of what the range of work in disabilities studies can offer us: a way to "imagine
disability otherwise." In her piece. Ware documents her collaborative work with a group of high school teachers who used writing from humanities-based disability studies to reflect on and expand their knowledge about disability, and—perhaps more importantiy—how to carry this knowledge into their own teaching practice. Ware's use of the phrase intended to make the point that the range of analyses and representations in disability studies scholarship offers "ways of knowing" and theoretical insights with which disability service providers can examine individual and societal attitudes, beliefs, and assumptions. It is this kind of critical reflection. Ware argues, that is required to shift the dominant narrative of disability in society that is reflected in person-fixing practices in the helping professions. Historically, the difference associated with disability was seen as something that could be "remediated away" or fixed. Interventions in the applied fields have often responded to the "problem" of disability and disability's interaction with classroom environments, commutiity living, and work places. However, work in disability studies approaches the construct that is labeled "disability" as multifaceted and complex. Interdisciplinary work in the field thus can allow us to develop a deeper and much broader understanding of disabuity as a part of our shared, human experience, as well as position disability
as a difference that is a potential source of interest and intrigue. These new and re-conceptualizations frame disability as a social construction and seek to address the social, cultural, historical, and material aspects of disability while at the same time acknowledging the physiological aspects of impaired function (Baglieri, Valle, Connor,& Gallagher, 2010). The shift in focus—to the limitations of attitudes, environments, contexts, and practices (from that of individuals)—allows disability-related professionals
to actually reposition and redefine the "problem" traditionally associated with disability (see Biklen, 2007; Biklen & Burke, 2006; Nusbaum & Rodriguez, 2010) and support an understanding of disability as a natural part of the htiman experience. Creating a cultural context for inclusive education
and community support Changing how societies (and ourselves!) think about and respond to disability can create the cultural space in which inclusive approaches to education, employment, living, and commutiity can flourish. Inclusive contexts are not going to flourish if we do not actively strive to
support the individuals with and for whom we work to live the best lives of their choosing (something the TASH community is very familiar with), as well as do this within a framework that views the label or demarcation of disabuity in very different ways. Therefore, inclusion and community support catinot be based solely on "what to do on Monday" and are not jtist a program or set of practices. The project of societal inclusion requires allinvolved to engage in (rather than avoid) difficult questions about the nature of disability and the practices surrounding the phenomenon of disability as well as to identify and challenge the sites of exclusion for individuals with disabilities within our schools, workplaces, and communities (Allan, 2008; Brantlinger, 1997; Mintz, 2009; Slee, 2001; Slee & Allan, 2001).
Scholars in disability studies, whose work is situated in education, use the analytic tool of deconstruction to expose exclusionary forces that exist within "inclusive"practices and programs. Through deconstruction (e.g., Slee & Allan, 2001), scholars argue that the dialogue necessary to ask critical questions about the nature of "inclusive" practices is created. In their 2001 article, Slee
and Allan ask if a "theory of activism" (p. 185) could facilitate new types of research and knowledge production. Their question opens a dialogue in which the roles of researchers without disabilities, activists, and individuals with disabilities are examined and the political nature of inclusion can be more fully explored. This type of dialogue is directly relevant to the TASH community, whose constituents cohere around a disability rights agenda, which is inherently political. Furthermore, disability studies scholars working in education (e.g., Allan, 2008; Graham & Slee, 2008; Slee, 1997; Slee & Allan,
2001, among others) conclude that the creation of inclusive contexts is dependent on, first, deconstruction 76 Ferguson and Nusbaum and, then, reconstruction of inclusive practice so that new ways of understanding disability can inform theoryand research—and thus create the cultural contexts for inclusive and community-based practice. An example of such work is Mintz's (2009) unpublished
at their school within their ideas about what inclusive
education "was" (the site of data collection had been inclusive
for over 10 years, but was required by district
mandate to create a separate classroom to serve some
students with disabilities in the year of data collection).
Mintz concluded that inclusive education needs to be
taught as both an ideological commitment, as well as
understood in terms of the technical implementation
of research-based practices. Finally, a general educator
teaching in an inclusive classroom in the documentary
"Including Samuel" eloquently supports our point about
inclusive communities by stating: "Inclusion doesn't create
community. Not having inclusion takes away from community"
(Habib, 2008).
Infusing the curriculum with disability studies
Scholarship in disability studies provides a vehicle to
examine social attitudes, beliefs, and assumptions about
disability as well as understand disability as a social
and political category versus something to diagnose,
identify, and label in individuals. Importantly, as Connor
(2010, 2011) articulates, this scholarship interrogates conceptions
of "normal" and in doing so "seeks to engage
everyone-teachers, practitioners, policymakers, scholars
and researchers.. .to rethink our perceptions of difference
and response to those differences" (p. 31). Thus, work in
the field not only broadens the knowledge base about disability
but also expands the epistemological boundaries
of how this knowledge is produced. Situating the study
of disability within and across a range of curricular areas
and including the lived-experience of disability allows
disability-related practitioners to engage with others in
ways that go beyond acceptance or tolerance and that
can foster critical reflection and understanding of the disability
experience and the social phenomena of disability.
In teacher education, disability is situated in programs
specifically designed to respond to disability (such as
communication disorders or special education credentiaiing
programs). General education teacher preparation
programs often address disability in a course using a
"disability-of-the-week" approach. This assumes that the
categorical markers and characteristics of various disability
labels are the most salient ways of knowing about
student disability in schools versus understanding structural,
institutional, pedagogical, and attitudinal constraints
that prohibit students from accessing social and
academic experiences in schools (Young & Mintz, 2008).
Brantlinger (2006) critiqued "the big glossies" (her term
for the mainstream textbooks used in the kinds of courses
previously described) and the reliance on a standard, categorical
approach in most of these texts. Both textbooks
and teacher education courses that focus on disability
categories, characteristics, and labels potentially reinforce
notions of disability as disorder or deficit and reinforce
traditional educational practices that respond to these
markers of difference by trying to fix them so that students
with disabilities may become more like their nondisabled
peers (Young & Mintz, 2008). They are founded
on the belief that these categories and characteristics
are the most salient features of the disability experience
and the most meaningful way to understand the position
of disability in schools. Brantlinger instead argues that
teacher education should adopt texts that address student
difference in multidimensional, interdisciplinary, personal,
and critical ways.
In contrast, Connor (2009) used narrative analysis represented
in political cartoons to convey the self-realizations
about academics, social, and personal demands of three
students labeled as leaming disabled in their transition
to coUege. Ferguson (2009) and Valle (2009) both situate
the perspectives and experiences of parents of children
with disabilities within a historical context to more
thoroughly understand the experience of families with
the special education system and professionals in the
field. Both authors discuss the power of professional and
institutional discourse in the identity shaping of students
with disabilities and the tensions and suspicions on
both sides of the professional/family relationship. In
her 2001 piece. Ware asks the question, "Dare we do
Disability Studies?" In this work she describes her efforts
using humanities-based scholarly work in disability studies
with high school teachers to support their dialogue
and critical reflection and begin to explore status quo
assumptions about disability that underpin the educational
system. Collins (2003) and Smith (2007) are examples
of critical investigations into institutional structures
and pedagogical techniques that can either support or
inhibit "ways of knowing" about student disability and
difference that sit in contrast to those found in mainstream
texts.
Employing a disability studies perspective also offers
tremendous richness in K-12 curriculum and creates multiple
avenues to trouble the normal-abnormal binary,
which is central to problematizing the status of disability
in many societal contexts. Addressing disability as curriculum
and infusing disability into existing curricular areas
is central to the task of "imagining disability otherwise"
(Ware, 2003). The Center on Human Policy at Syracuse
University (http://www.disabilitystudiesforteachers.org/) offers
a number of resotirces for teachers seeking disability
studies curriculum. Examples of how this might happen
Disability Studies: What Is It? 77
include (a) the disability rights movement as a part of
teaching in the social sciences about the civil rights movement;
(b) the role of American and German eugenics
in disability history, and (c) disability as a meaningful and
powerful analysis tool in literature and art courses. The
Center on Human Policy's Web site offers lesson plans
and curricular resources that connect disability to standards
in various academic content areas as well as include
lesson objectives, questions, resources, and other materials.
In their guide for teachers and teacher educators.
Valle and Connor (2011) address the quesfion "how do I
talk about disability in my classroom?" and encourage
educators to actively and specific challenge normalcy by
making disability and its representafion a specific topic of
conversafion in K-12 classrooms. The authors talk about
the power of silence around the topic of disability and
offer some challenging questions to prompt educators to
address disabuity, itself (rather than only the pedagogical
pracfices one should use to respond to it). VaUe and
Connor argue that by addressing "the elephant in the
room" (p. 190), conversafions about disability have the
potenfial to dispel discomfort and shift the perspective
about disability from deficit or disorder to part of natural,
human variafion and the foundation of a truly inclusive
school community. Situafing disability within and across
K-12 and higher education curriculum can further support
the contribufion of multidisciplinary work from disability
studies to the efforts of inclusion across social contexts—
specifically classrooms and educafion communifies where
students with and without disabilifies learn together.
Creating critical and reflective helping professionals
Baglieri et al. (2010) revisited a 2000 article in Remedial
and Special Education that idenfified five key differences
between tradifional special education scholars
and those who saw special education as needing "substantial
reconceptualizafion" (Andrews et al., 2000, p. 258).
The fifth of the key differences between these two groups
in the original arficle identified the need for more selfreflective
teachers who used ethical decision-making
in their work as being a key step in improving special
educafion. The kind of crifical and reflective pracfice
encouraged by those seeking to "reconceptualize" tradifional
special education and, by extension, other applied,
disability-related professions goes beyond considering
quesfions like "did the lesson I taught go well?" Rather,
becoming a critical and reflective pracfitioner requires
that we ask ourselves hard questions that attempt to get
to the social meaning and social consequences of our
work with individuals with disabilifies. Ware (2003) characterizes
this kind of reflection as "belief in action," which
requires that first we understand/know our beliefs about
disability and thus can begin to explore how our individually
held ideas are carried out in unconscious ways in
our work with individuals with disabilities. This also requires
that we (those of us who idenfify as nondisabled)
willingly examine our nondisabled privilege and power
and acfively ufilize strategies to release the power given
to us because of our "expert" and/or nondisabled status
to undo the ableism that is pervasive in the applied,
disability-related fields. Finally, Ware (2001) offers three
questions for disability-related practifioners that can begin
the process of critical reflection:
What can I understand about the identity of others who
appear different from myself?
What can I learn about my own identity through understanding
the identities of others?
Can disability ever represent anything other than a negative
image? (p. 114)
Scholarly, interdisciplinary work in disabuity studies provides
many vehicles with which practifioners and scholars
can begin to develop new meanings about disability and
crifically examine issues of access, employment, education,
sexuality, and representation as well as to ufilize
strategies for disability empowerment and acfivism. By infusing
both professional and K-12 curriculum with these
new and re-conceptualizafions of disabuity represented
in disability studies, questions such as those posed by
Ware might begin to be answered.
Disability studies needs the TASH community
Thus far, much of our focus has been on the contribufions
that disability studies can make to efforts to reconceptualize
policy and pracfice within traditional fields
of special educafion and human services. We strongly believe
that progressive organizafions such as TASH need
to incorporate the new generation of scholarship that is
emerging from interdisciplinary research and conceptual
analysis in disability studies. TASH needs disabuity studies.
However, we also strongly believe that disability studies
needs TASH. Or, at least, the inquiry within disabuity
studies needs to be confronted with the issues and experiences
of an organizafion with a specific interest in people
with significant intellectual disabilities.
While the situation has improved over the last decade
or so, it is still true that certain types of disability identifies
are less commonly the focus of disability studies
research. Among those categories of impairment less well
represented within the disability studies literature is intellectual
disability generally, and significant intellectual disability
more specifically. The reasons for this imbalance
are multiple and debated. Simplisfic descripfions of social
construction both inside and outside disability studies
have made it seem somehow less applicable to people with
the most significant cognifive impairments. People with
physical or sensory impairments led the way in early demands
for recogniüon and inclusion in all branches of research
on the experience and meaning of their disabilifies
(Fine & Asch, 1988; Oliver, 1992, 1993). Crifics of social
construcfion (Anastasiou & Kauffman, 2011), on the other
hand, often use the seemingly overwhelming impairments
of significant inteüectual disability as the best example
78 Ferguson and Nusbaum
of an objective reality trumping whatever cultural contingencies
might contribute to the meaning of less pervasive
disabilities. Disability studies, ftom such perspectives, may
bave something to contribute to the exploration of other
disabilities, but not to those where the limitations are so
clearly individual rather than social.
Members of TASH know better. It is essential that
their familiarity with the experiences and contributions
of people with significant intellectual disabilities to our
deeper understanding of buman differences be brought
to a larger audience of disability studies scholars who
have little contact witb such individuals. The process
has already begun. Parent narratives by scbolars within
the humanities have started to illustrate how their life
experiences can make valuable contributions to the disability
studies literature (Berubé, 1996; Gabbard, 2011;
Kittay, 1999; Savarese, 2007). Beyond sucb accounts,
however, disabuity studies needs to learn more about
the possibilities of inclusive policies for those with even
the most significant disabilities. Notions of supported
employment, self-directed services, natural settings, and
informal supports need to be shared with an approach
to policy analysis that concentrates on concepts of independent
living and personal attendant care. TASH
needs to help disability studies as a field to expand and
invigorate its conceptual purview beyond its earliest
interests and concerns.
Teaching the Tensions
We would like to conclude tbis paper with a brief discussion
of tbe complications tbat are created wben a
disability studies perspective is introduced into disabilityrelated
applied fields, such as special education or rehabilitation.
We argue that this space—tbe place where the
complications and tensions lie—is the place where it
becomes possible for disability to acbieve truly full inclusion
into our society. For example, contrasting disability
studies with theory and practice in traditional
disability-related fields allows us to understand the tension
between giving students tbe services they need,
while not subscribing these students to a future of social
and economic dependence (Young & Mintz, 2008).
This place of tension between tbe goals of traditional,
disabuity-related fields allows us to ask questions:
Is it possible to minimize impairment by focusing on ability
and celebrating disability?
Can we acbieve both full inclusion in all aspects of life, and
at tbe same time foster a positive disability identity?
Disability studies and the enormous range of work in the
field—historical, literary, artistic, philosophical, sociological,
and beyond—attempts to make visible tbe aspects
and nuances of disability that remain largely invisible
within tbe applied professions, in their focus on reducing
evidence of disability within an individual student or
client. The tensions exposed by disability studies help
us shift the conversation ftom being "about" an individual's
impairment to an understanding of disability
through the range of lenses tbat exist in such a multidisciplinary
field.
Finally and importantly, scholars in disability studies
believe strongly that the voice of individuals with disabilities
is a necessity in the production of research and
scholarly work and is central to the epistemology of
disability. As a field, disability studies recognizes and
privileges the knowledge derived from the lived experiences
of people with disabilities. Whenever possible,
scholarly work in the field conducted by nondisabled
researcbers adberes to an emancipatory stance, meaning
that researchers work with participants as coresearchers
("participant-researchers" rather than "subjects"; Connor,
2009). Young and Mintz (2008) point to one of tbe tensions;
then, inherent in employing a disability studies
perspective on researcb about disability in the applied
fields by asking, is it possible to respect the knowledge
gained by expertise wbile at the same time critiquing
the way expert knowledge is used on a day-to-day basis
(p. 500)?
We end with an articulation of tbese tensions—
questions that are not easily answered and that perhaps
are best left open for revisiting tbrough our work. How
can the principles and perspectives of constructivism
and behaviorism interact with each otber in the support
of children and adults with significant intellectual disabilities
for sbared goals of social justice and inclusive
communities? Can pluralistic approaches to research
acknowledge and appreciate the different traditions of
inquiry while sharing goals of rigor and merit to evaluate
our varied claims to generate knowledge? Can an
intellectual home be found (or created) where abstractions
and theoretical analysis are juxtaposed with policy
and practice without either claiming priority of place
over the other?
It is our belief tbat TASH is uniquely positioned to
provide a constructive context witbin wbicb to explore
these questions. It can be a professional context witbin
wbicb different perspectives can rub elbows ratber tban
bang heads. That, to us, is the ultimate promise of disability
studies to people witb significant disabilities and
their families.
