Disability Studies in Education

Susan Gabel

In spite of the growing influence of disability studies over the last three decades, educational researchers, by and large, have come late to a movement that that began officially with a proclamation by the Union of Physically Impaired Against Segregation (UPIAS) in 1972 in the United Kingdom (UK) and with the founding of the Society for Disability Studies (SDS) in the Unites States (US) in 1982. Since 1990, the Modern Language Association (MLA) and the American Anthropological Association (AAA) have formed special interest or discussion groups for their members. Finally, in 1999, almost thirty years after the UPIAS statement and almost twenty years after the founding of SDS, a special interest group (SIG) of the American Educational Research Association (AERA), “Disability Studies in Education” (DSE), was formed, marking the formal beginning of what has become a growing movement in educational research, theory and practice. The SIG describes disability studies and its application to education as follows.

Disability studies is an emerging interdisciplinary field of scholarship that critically examines issues related to the dynamic interplays between disability and various aspects of culture and society. Disability Studies unites critical inquiry and political advocacy by utilizing scholarly approaches from the humanities, humanistic/post-humanistic social sciences, and the arts. When specifically applied to educational issues, it promotes the importance of infusing analyses and interpretations of disability throughout all forms of educational research, teacher education, and graduate studies in education (DSE, ¶ 1).

Initial SIG efforts were aimed at disseminating information about disability studies, encouraging educational researchers to become interested in and use disability studies, and providing alternative ways to think and talk about disability in educational research.

Since 1999, the field of disability studies in education in the US has grown to include: 1) numerous peer reviewed publications; 2) a conference sponsored annually by National-Louis University in Chicago, led by Dr. Valerie Owen and the Louisiana Technological Institute/Louisiana Center for the Blind in Ruston, Louisiana, with the support of Dr. Ron Ferguson; and more recently, Teachers College in New York City, led by Dr. D. Kim Reid, David Connor, and Jan Valle; 3) a short-lived journal co-edited by Scot Danforth and Susan Gabel (Disability, Culture and Education); 4) annual SIG meetings and sessions at AERA; 5) a book series with Peter Lang (Disability Studies in Education) co-edited by Susan Gabel and Scot Danforth, the first book of which is excerpted here; 6) and, in addition to a long-standing program at Syracuse University, the emergence of numerous graduate concentrations and programs in disability studies/education (e.g., Teachers College, National College of Education at National-Louis University). Most recently, the Ontario Institute for Educational Studies announced its search for a faculty member in Disability Studies in Education. The rapid expansion of interest in disability studies in education in just five years demonstrates the relevance and importance of this field of inquiry for educational research and practice.

Social Interpretations of Disability

One hallmark of disability studies is its adherence to what has been called a “social model of disability” (Abberley, 1987), first suggested by Vic Finkelstein (1980) and other disability rights activists, in which disability is understood as a form of oppression. Although “social model” is the most common usage of the concept, I agree with Vic Finkelstein (2001, ¶. 2) that the phrase “social interpretation” is a better and more inclusive representation of disability studies standpoints. In this paper, I use “social model” to refer to the traditional historical-materialist version of the social interpretation of disability. In contrast, I use “social interpretation” to refer to the wider array of disability theories in disability studies (e.g., disability identity, disability embodiment, disability discourse). As a whole, social interpretations of disability contrast with typical educational views wherein “disability” represents innate individual deficits. In disability studies, the disability-as-deficit notion is referred to as a clinical or medical model and is rejected as the basis for understanding the lived experiences of disabled people because it tends to pathologize difference and rely upon expert knowledge (i.e., physicians, special educators, rehabilitation counselors) to “remediate” difference (Society for Disability Studies, Guidelines for Disability Studies, ¶ 3).

It is fairly well accepted that the earliest formal expression of the social model originated in the disabled people’s movement of the UK in 1975 when UPIAS issued a policy statement in which it argued that “the traditional way of dealing with disabled people has been for doctors and other professionals to decide what it best for us” (Section 14) and called for disabled people’s resistance to the medicalization of disability and “the imposition of medical authority” (ibid.) over their lives. Shortly thereafter, in the Fundamental Principles of Disability, UPIAS (1975) framed the basic assumption of the social model.

In our view, it is society which disabled physically impaired people. Disability is something that is imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society (3).

Not only did UPIAS stake out the origin of social interpretations of disability, it argued strongly against segregation and demanded the supports necessary to facilitate full inclusion in society, stating that those supports

must include the necessary financial, medical, technical, educational and other help required from the State to enable us to gain maximum possible independence in daily living activities, to achieve mobility, to undertake productive work, and to live where and how we choose with full control over our lives (UPIAS 1974/75, ¶ 1).

The American counterpart to the early social model, the minority group model, emerged in the late 1970’s in the United States (US), and was clearly influenced by the American civil rights movement’s claims the social status of members of minority groups. Adherents claimed that minority group members experience marginalization, disenfranchisement, discrimination, stigmatization, and stereotyping as a result of their minority status (Schwartz, 1988, Rioux, 1991; Hahn, 1988; Wang, 1992; Pfeiffer, 1993). One early article by Robert Bogdan and Doug Biklen (1977), adapted the

vocabulary of the civil rights movement, identifying “handicapism” (consistent with the popular use of “handicap” at that time) as “a set of assumptions and practices that promote the differential and unequal treatment of people because of apparent or assumed…differences” (15).

Ableism

Bogdan and Biklen’s concept is still used today in the disability studies literature but in lieu of “handicapism,” the term “ableism” is used. Various definitions of ableism exist. The Hyperdictionary defines ableism as “discrimination in favor of the able-bodied and able-minded. Some local school districts are giving attention to the term, as does the Peel District School Board of Mississauga, Ontario, Canada on its website’s definition: “A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical, or psychiatric disabilities” (¶ 1). Thomas Hehir, former director of the U.S. Department of Education’s Office of Special Education Programs, former Associate Superintendent for the Chicago Public Schools, and former Director of Special Education in the Boston Public Schools claims that ableism in education is, “The devaluation of disability” that “results in societal attitudes that uncritically assert that it is better for people to walk than roll, speak than sign, read print than read Braille, spell independently than use a spell-check, and hang out with nondisabled students as opposed to other disabled students” (Hehir, 2002, ¶ 7). These definitions and common usage indicate that ableism, entails: social biases against people whose bodies function differently than what is considered “normal,” and beliefs and practices resulting from and interacting with the biases that serve to discriminate. The traditional social model would add that such practices do more than discriminate; they oppress.

Debates about Social Interpretations

In the late 1990’s, the term “social model” became quite predominant among those in disability studies around the world, including scholars in the US, however such usages might be revised by Finkelstein’s term, “social interpretation.” Today, a myriad of interpretations and uses of the term “social model” can be found, including more traditional minority group model applications and as a result, when noting an author’s claim to be using the “social model,” it can be helpful to ask which version of the social model is being purported (Gabel and Peters, 2004). In fact, Gabel and Peters’ review of the last decade of disability studies literature reveals that the social model is claimed by authors operating across paradigms, theoretical frameworks, and disciplinary boundaries. Given this, it might be of greatest usefulness to merely replace “social model” with “social interpretation(s),” as Finkelstein has suggested.

While both early social interpretations of disability (the traditional British version of the social model and the minority group model in the US) were concerned with the collective experience of a group of oppressed or marginalized people, subtle distinctions in discourse stemming from political and cultural differences distinguished them. Generally speaking, the UK version purported by UPIAS and subsequently by sociologists in the UK, adhered to a sturdy neo-Marxist philosophy with clear delineations between disability (social oppression) and impairment (functional limitation) while the US version remained more eclectic, usually did not adamantly distinguish between disability and impairment, and emphasized the social construction of disability more than the socio-political processes of disablement.

In disability studies, as in identity politics in general, there have been tensions between competing political interests and agendas. This is particularly true in disability studies, however, because one defining characteristic of disability studies has been a rejection of the medical model, which is a highly individualized model of disability. Historically and for political purposes, the disability studies and disability rights communities have resisted individual interpretations of disability experiences and preferred interpretations of collective socio-political issues. It was argued that for too long, individualistic notions of disability focused on what was perceived as innate individual deficits (e.g., the medical model) and their amelioration at the expense of examining the social processes that disable individuals. Vic Finkelstein (2001), an important figure in the UK disability rights community and a member of the original team drafting the UPIAS Fundamental Principles of Disability, has gone so far as to argue that within the social interpretation of disability, “disabled people are not the subject matter” (1), suggesting that disablement (i.e., the social oppression of people with impairments) is the subject matter. However, when one examines the literature of the last eight or more years, this is not proven to be the case (Gabel and Peters, 2004). In fact, a good deal of social interpretation of disability examines lived experience and embodiment (e.g., Corker, 1999; Peters, 1996; Ghai, 2002, 2003; Thomas, 2001; Snyder and Mitchell, 2001). In disability/postmodernism, edited by Mairian Corker and Tom Shakespeare (2002), there is significant interest in embodiment. Authors explore, to name a few: touch, ethics, and disability (Price and Shildrick, 2002), desirability and the practice of the self in men with cerebral palsy (Shuttleworth, 2002), aesthetics of disability (Silvers, 2002), and madness and distress (Wilson and Beresford, 2002).

For a time, it seemed as though the importance of collective voice and political action outweighed concern for the individual, including the individual who resisted the dominant discourse of the disability rights movement. In 1996, Susan Peters argued against this radical stance, concluding that “individual perception is intertwined with collective identity, but must remain simultaneously independent of it…in order to change it” (231). Her suggestion, and the suggestion of other proponents of the identity model, was to “integrate the personal and political in an ‘enduring hyphenation’” (ibid.). This concern for individual experience alongside collective experience is often discredited by those who find collective theories more compelling and politically efficacious.

In the late 1990’s, some critics of these early strands of the social model argued that neither a pure Marxist structuralism, nor a less emphatic but still structural minority group model, nor the identity model—even with its nod to the individual—acknowledge and account for the subtleties and ambiguities inherent in the experiences of the disability community (and its individual members) that “privileges some impaired identities over others” (Humphrey, 2000, 63). In 1999 Mairian Corker, a Deaf scholar from the UK, suggested the following.

Academics in the field of disability studies aim to develop a social theory of disability, which comes as close as possible to explaining the ‘reality’ of disabled people… However, pursuing this ideal may mean accepting that there will always be a gap between what any theory can offer, and what disabled people need to know in understanding and changing their lives—a gap that may be exacerbated by power and knowledge inequalities and by the research process (627-8).

Another social interpretation, and one that has been debated within the disability community and between disability sub-communities, has purported that disability is a phenomenon emerging and resulting from the values and practices embedded within culture and that there is, as a result, a disability culture (Peters, 2000). This literature points to a slowly growing body of comparative disability studies as evidence for the cultural construction of disability and the viability of disability culture (Peters, 2000). Susan Peters and Robert Chimedza have studied disability in the Zimbabwean context (2000). Susan Gabel (2001, 2004) has studied it in the context of South Asian Indian immigrants to the US. Other comparative studies exist in the broader field of disability studies but this is an untapped area of research in the disability studies in education community. Until we produce more comparative educational research, there is a wide body of comparative literature outside education.

Today’s Eclecticism

Recently, disability studies has seen an emergence of voices arguing for eclecticism within the social model or the dissolution of the social model along with other meta-narrratives. The influence of the humanities is evident here. Analysis of the programs of the annual meetings of SDS suggest that in the mid- to late 1990’s the American field of disability studies was in transition toward a strong if not predominant influence from the humanities. In 1998 The Chronicle of Higher Education, Peter Monaghan noted that

the new, humanities-oriented approach to disability studies borrows from…cultural studies, area studies, feminism, race-and-ethnic studies, and gay-and-lesbian studies. It is extensively informed by literary and cultural criticism, particularly of the post-structuralist variety, insofar as it pulls apart concepts about disability to see what cultural attitudes, antagonisms, and insecurities went into shaping them (¶ 13).

For example, Tom Shakespeare and Nicholas Watson (2001) argue that the “strong social model,” which they defended in an earlier article (1997) and which is the version mapped out by UPIAS and upheld by many who adhere to the traditional social model, is a “modernist theory of disability—seeking to provide an overarching meta-analysis covering all dimensions of every disabled person’s experience” that “is not a useful or attainable concept” (19). Likewise, Gabel and Peters (2004), both disabled scholars, argue that we need to find “ways of theorizing disability more suited to current contexts and more responsive to emerging world trends” (586) and suggest that this might be done through the use of resistance theory to understand the complex relationships and negotiations between divergent ideas while also uniting the global disability community toward praxis.

Conceptual frameworks that encourage fluid ways of interpreting disability experiences and various critiques of the strong social model suggest that the social model, itself, may be replaced at some point in the future. The question is—with what? One suggestion comes from Gabel and Peters (2004) in an argument for using resistance theory to interpret disability to provide “a way out of the determinist and universalist claims of the social model by offering a fluid, malleable theory responsive to particular context” (592). They suggest that the social model, itself, emerged in resistance to the medical model and that resistance is inherent within all strands of the social model: resistance to stigma, disablement, social oppression, political and economic exclusion, etc. On the other hand, disabled people are not the only ones resisting. There is resistance against disabled people, as well. A resistance theory of disability maintains the social model’s focus on the politics of disablement and adds to it a recognition of the complexities of resistance as

operating in all directions of the social sphere…Resistance functions as a way for disabled people to push against dominance while also attempting to pull society into disabled people’s ways of seeing (594-595)

This positions resistance as a multi-level, multi-dimensional dialectic within which there is push and pull, give and take, deconstruction/reconstruction between players at all levels of the social world. In addition to interpreting resistance as engagement in dichotomous processes, resistance theory also connotes an open-ended negotiation of meaning, a fluid dialectic movement without the constraints of time or space. It addresses the critics of the strong social model by opening up possibilities and blurring boundaries while it also avoids the theoretical tendency to construct abstract or rigid models from which action and social change cannot emerge.

The social model’s rejection of the medical model continues to be a mainstay yet there is some internal resistance to outright rejection of the medical model. Gabel and Peters (2004) suggest that some benefits for disabled people have come from the scientific method underlying the medical model; for example, medications and other technologies that improve function. The danger, of course, is in the misapplication of the medical model to the social contexts of disability. Some of these misapplications include: using the medical model to diagnose, prescribe and treat “conditions” that are the result of institutionalized oppression; adhering to the medical model’s emphasis on individual pathology while ignoring social pathology; reproducing the myths used by the medical model (e.g., IQ) to stigmatize individuals and groups with labels; and dehumanizing individuals with functional limitations. There is also the danger—identified by various stakeholder groups—of the assimilation of disability culture through the use of the medical model to “cure” people when the results could be cultural genocide (e.g., curing deafness thereby eliminating Deaf culture, Tucker, 1998; or curing Dwarfism thereby eliminating Little People, Ricker, 1995).

Method in Disability Studies

Method in disability studies often follows the methodological traditions in the disciplines and has evolved over time, as have disciplinary traditions. One method in disability studies, sometimes referred to as the “emancipatory method” (Barnes, 2003; Duckett and Pratt, 2001; Walmsley, 2001; Davis, 2000; Kitchin, 2000), assumes that disabled people are the experts on disability and that their leadership and involvement in the research process is necessary for any research about them. Consider James Charlton’s (1998) book title—Nothing About Us Without Us—as a mantra of the emancipatory research method. The basic assumption in the emancipatory method is that research must proceed with participation and leadership from disabled people to the greatest extent possible. Research agendas must be driven by the concerns defined by disabled people. It is assumed that when this is followed, disabled people’s problems of access and liberation are more likely to be solved; emancipation is possible because disabled people are the ones who best know the issues and problems and can best frame the questions that guide research and the analysis of data gathered through research. The emancipatory research literature is very similar to what educators refer to as action research but tends to have a stronger emphasis on leadership and involvement by disabled people, or the group in whose interest the action research is being conducted. Ultimately, emancipatory research is concerned with a Freirian form of praxis, or a conscious effort at social change that brings about equity, social justice, and full participation in society where the work toward social change is led by those who are, themselves, oppressed.

One methodological dilemma for educators is the problem of deciding how to balance the need for the improvement of function (often the school’s concern) with the refusal to pathologize and the reticence to “cure” difference (two concerns of social interpretations). In education, the balancing act becomes quite complex and the questions we ask as educators are often different than the questions asked by disability studies scholars and practitioners in other fields. For example: When does “difference” signal functional limitations to the extent that the individual needs intervention, support, or assistance different than is typically offered to students in order to benefit from education? This question does not assume that all forms of difference must be “cured.” How and when do teachers and parents decide it is time for a special education referral? This question does not assume that a special education referral is the best option when students are struggling. How can students with significant educational needs get an appropriate education while simultaneously remaining full citizens of the school community? This question assumes that full citizenship mitigates against disablement. What is an appropriate education for students with significant educational needs? Are separate educational contexts ever warranted and if so under what conditions? These questions are sceptical of the assumption that students with significant educational needs require a separate education. Are separate contexts (i.e., self-contained classrooms) always oppressive or can they sometimes be liberatory and who decides whether an educational context is oppressive or liberatory? This question assumes that there can be liberation and oppression in any educational context but interrogates the power relations in making claims about such matters. Is it possible to find the balance between individual educational preferences and school politics and if so, what is that balance and how do we achieve it? This question assumes that tensions between individuals and institutions will exist even in the best of circumstances. What are the underlying assumptions in the “over-representation in special education” arguments, do those assumptions perpetuate disability stigma, and if so, how? This question assumes that ableism exists everywhere, even within standpoints that appear concerned with oppression and liberation. How can education be organized to prevent institutionalized oppression of any student? This question assumes that without educational praxis, disablement (or other forms of oppression) will occur. These questions are not asked often by scholars in disability studies but they are questions that disability studies in education must ask and answer.

Disability Studies in Education

In many ways, describing disability studies in education is like describing philosophy of education or history of education. One could define disability studies in education as the use and application of disability studies assumptions and methods to educational issues and problems. A later book in this series, Vital Questions in Disability Studies in Education (Danforth and Gabel, forthcoming), will map out the field in much greater depth and may contradict some of my points in this chapter. To begin thinking about disability studies in education, one can refer to the Society for Disability Studies (SDS, Guidelines for Disability Studies). While the guidelines are for programs in disability studies, they provide a sense of the landscape of disability studies from the perspective of the oldest scholarly society devoted to disability studies: 1) it is multi-/inter-disciplinary, 2) it “challenges the view of disability as an individual deficit that can be remediated” and explores the external factors (e.g., culture, society, economics, politics) that define people and “determine responses to difference,” 3) it studies disability from national and international perspectives, 4) it encourages participation by disabled people and “ensures physical and intellectual access,” and 5) prioritizes leadership by disabled people while also welcoming the contributions of those who share the above goals. In the past, many scholars in disability studies have argued that disability studies is characterized by adherence to the “social model. ” However, this is changing and as I have cited earlier in this chapter, many strong social modelists are recognizing the usefulness of perspectives in the humanities and post-structural social sciences.

On the other hand, there has been some conversation among Disability Studies in Education SIG Members (e.g., Ferri, 2003) about the potential contributions of educational research to disability studies. This might need consideration as one of the goals of our SIG for the next few years.

Conclusion

To return to the simple description of disability studies in education, disability studies in education is concerned with issues and problems of education, broadly construed, that affect or are affected by disablement in educational contexts. Disability studies in education is primarily concerned with the view of issues and problems as defined by disabled people and as they relate to social exclusion and oppression. These are broad categories, however, and can include economic, political, historical, and other institutions when examined through the social lens. Since it is concerned with the full range of educational issues, disability studies in education is not limited solely to issues and problems in special education. At first, this can seem counter-intuitive to educators who have spent their careers putting disability into a special education box. However, disabled students and teachers can be found throughout public and private schools, traditional and non-traditional educational settings, and pre-kindergarten through higher education. Furthermore, educational disablement often begins in general education settings, as when reasonable accommodations are refused, school communities are exclusive, parents believe their child with an impairment will not receive equitable treatment in general education, or the necessary resources for full inclusion are not provided. In fact, there are those using disability studies whose research remains grounded outside special education or disability studies, such as those in curriculum studies (Baker, 2002a, 2002b), educational foundations (Erevelles, 2000), and history of education (Seldon, 1999, 2000; Goodman, 2003). I propose that the wider we cast the net, the more influence disability studies in education will have, and the more we influence education research, theory and practice, the more likely we can successfully work toward social justice in all educational contexts.

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