Disability Studies Quarterly
Fall 2006, Volume 26, No. 4
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


Review Essay: Educational Perspectives on the Encyclopedia of Disability, in
Three Parts

Albrecht, G., Bickenbach, J., Mitchell, D.T., Schalick, W.O., & Snyder, S. L. (Eds.). (2005). Encyclopedia of Disability (Vols 1-5). Thousand Oaks: Sage Publications Vols. I-IV: Continuous pagination, 1934 pp.; Vol. V: 525 pp.


Part I
Kathy-Anne Jordan, Ed.D.
Assistant professor of special education
College of Education
Chicago State University
kjorda22@csu.edu

The Encyclopedia of Disability is a five-volume, multidisciplinary, international attempt to summarize the state of knowledge about a wide range of topics pertaining to disability. Over 800 alphabetized entries and primary source documents are grouped under 25 categories: Accessibility, Arts, Biographies, Children and Infants, Disability Studies, Deafness and Deaf Culture, Economics and Employment, Education, Ethical Issues, Experience of Disability, Health and Medicine, Health Care, History of Disability, Information Technology, Language of Disability, Law and Social Policy, Models, Organizations, Politics, Rehabilitation, Rehabilitative Engineering and Assistive Technology, Religion, Science, Sports, and Therapies. The Encyclopedia includes illustrations, citations to websites and other references and bibliographies, and also chronicles issues and facts pertaining to disability across time (BCE to the present) and geographic location.

The Encyclopedia is an important resource for anyone interested in gaining critical perspectives on a range of disability-related issues, as several authors describe and challenge the attitudes, behaviors, and assumptions that perpetuate inequities for persons with disabilities. For example, Sandra J. Levi, writing about the Experience of Disability examines the issue of ableism, or the "discriminatory attitudes and practices that promote unequal treatment of disabled persons," (p. 83) and its common manifestations including lowered expectations, beliefs about the benefits of "normalcy," limits to self-determination, labeling, and eugenics. Within the context of education, ableism is commonly manifested through exclusion of students whose social and/or cognitive differences are believed to be pathological.

While differences in social and academic performances do exist, disability often results from unexamined attitudes, assumptions, and practices that restrict the possibilities for teaching and learning within the general education classroom–often leading to disproportionate rates of special education placements among students of color.

Several entries (e.g., see Models–Models, by Tom Shakespeare, Jerome E. Bickenback, David Pfeiffer, and Nicholas Watson; Language of Disability–Impairment, by Bruce Henderson) discuss the construct of disability as the outcome of an individual's interaction with his or her environment. Other contributors discuss efforts needed to redress inequities resulting from ableist assumptions in education and other social spheres (e.g., see Education–Inclusive Education, by Margaret J. McLaughlin; Language of Disability–Language of Disability, by Sharon Snyder; Race, Disability, and Special Education, by Nirmalla Erevelles). The Encyclopedia of Disability thus serves as a valuable resource for critical inquiry and examination of issues pertaining to disability.


Part II
Rachel Oppenheim and Jean Y. Wong, Doctoral Students
Teachers College, Columbia University
Emails:
rlo2101@columbia.edu and jyw8@columbia.edu

In this review we engage in a dialogue about our respective reactions to and reflections upon the encyclopedia. Because the Encyclopedia of Disability is so large we could not possibly respond to each of its myriad topics or themes. We therefore chose the dialogue mode as a way to convey issues suggested by the encyclopedia that we found interesting, problematic, and thought-provoking. Guiding our approach was a desire to discern how useful the compendium might be for its varied potential audiences.

About the Reviewers

Readers should know the positions from which we are writing vis-à-vis disability. We write from the perspectives of young, nondisabled women in the midst of doctoral study related to disability studies and education. Before entering our doctoral program, both of us had taught students who were labeled "disabled," and are currently involved in classroom settings with such students. We are both engaged in research and in writing about disability, and we each adhere strongly to a stance that disability is "a social, political, and cultural phenomenon" (Linton, 1998, p. 2), eschewing medicalized, deficit-based models of disability.

Nevertheless, our views and opinions are far from identical. On the contrary, we offer markedly different perspectives on Encyclopedia of Disability with respect to its values, merits and shortcomings.

Rachel

As I considered the daunting prospect of reviewing this tome, knowing that I could not possibly read each of its numerous articles even in a cursory manner. I chose to approach it as I or a fellow graduate student might, searching for subjects of particular interest to me, or about which I wanted more information. As I did so, I considered how useful the encyclopedia would be as a resource, how well-rounded and multifaceted its depictions and descriptions were for those who might be unschooled in the complexities and nuances of disability and of the disabled community. After viewing the encyclopedia in light of its utility for students (and most likely for scholars), I am hesitant to recommend it as a research tool or learning resource.

In his introduction, general editor Gary Albrecht described the Encyclopedia of Disability as a "multidisciplinary" (p. xvi) resource whose contributors cut a wide and comprehensive swath. Indeed, one of the first things that I noticed as I browsed the five volumes was the absence of a consistent theoretical framework that might serve to ground and connect the disparate topics and issues represented. On the contrary, while the authors of some entries obviously championed a Disability Studies (DS) approach, interrogating the definitions and labels that have long been used to define and inscribe disabled people, other authors seemed to subscribe to the very medical and scientific models that DS so vehemently calls into question.

In her entry on "Learning Disabilities", Garate offered nuanced descriptions of various learning disabilities and their diagnoses. Yet she also outlined the critiques that many have leveled against this label, pointing out that societal factors are often implicated in whether a child is diagnosed and that children from racial-ethnic and language minority groups are often overrepresented in certain learning disability categories. Al-Sharbati, on the other hand, took a strictly medical approach to his entry on "Behavioral Disorders," offering strict diagnostic criteria and using words such as "suffer"–language avoided by the DS community–to describe those labeled with behavioral disorders. These two entries emerge out of widely disparate theoretical groundings and as a result the information that they impart is in many ways contradictory.

It is apparent that Albrecht and his fellow editors consider the range of theoretical frameworks represented by the encyclopedia's entries to be an asset. Albrecht wrote, "The encyclopedia is composed as a multidisciplinary, cross-cultural, and historically grounded resource tool that should lead the reader across fields, theories, debates, and practices" (p. xvi). However, I question whether readers will explore the encyclopedia in the manner that Albrecht envisions, whether they will in fact browse the various fields and debates that the volumes offer.

Instead, I suspect that many readers will simply proceed to the one or two subjects about which they are interested or curious. As a result, such readers may be exposed to a limited–and perhaps even detrimental–view of their topics of interest. If a reader who wishes to know more about behavioral disorders were to look to the Encyclopedia of Disability for an explanation, she would find an entry that dwells on the deficits of those labeled with behavioral disorders, an entry that describes such people as "sick" (p. 161) and dangerous.

I worry that the absence of a consistent theoretical grounding among the authors of the Encyclopedia of Disability insures that within any given entry a reader is exposed to only one explanation, an explanation that may portray those labeled disabled as inherently flawed or disordered. Moreover, because many regard the information within an encyclopedia as the unequivocal and unbiased "truth," few may question the information that they gather on their brief forays into the Encyclopedia of Disability and its topics.

Jean

While I agree with you in finding medicalized representations of disability to be problematic, I question whether it is feasible or desirable for an encyclopedia to present a common theoretical framework. The purpose of the encyclopedia is not to legitimize a single perspective. As a compendium of comprehensive knowledge, the encyclopedia should encompass wide-ranging topics and reflect current thinking from multiple perspectives. From a DS perspective, by including multiple theoretical stances, the Encyclopedia of Disability demonstrates the sociocultural, political, and historical construction of disability. The fact that there is not an agreed upon conception of disability opens up the disability discourse beyond the current dominance of pathologized perceptions. By incorporating multiple viewpoints, the editors uphold the notion that disability is a construct that is constantly shaped by the historic moments in which we live.

As you mentioned, some readers may regard contents within an encyclopedia to be uncontested and impartial; by including pluralistic perspectives, Encyclopedia of Disability disrupts the notion of legitimate "truth" by offering multiple theoretical frameworks regarding disability. As Albrecht noted in the introduction, "when authors were writing about contentious issues, they were encouraged to present the various positions and their rationales" (p. xv). In doing so, the encyclopedia reveals that even among the "experts" (p. xv), there is not a uniform understanding, meaning, or representation of disability.

Perhaps, as you suggested, a reader may select only an entry to read. But alternatively, a person may use the "Reader's Guide" of compiled thematic categories to read across related entries or topics. One could conjecture ad infinitum about readers' research habits or their interpretations of the information. The significance, I think, is in the editors' request for authors to explicate their decisions to use a certain language and reveal their positionings so that audiences may judge for themselves the relevance of the information. As Albrecht explained, "Disability is often referred to by different terms and concepts. Rather than forcing each contributor to use the same language, the editors decided to let the authors use the terms and concepts of their culture but to explain them when necessary" (p. xv). I understand your concern that readers may choose to read a single entry, but it is safe to say that a reader does not have to venture far to notice that this is not an encyclopedia comprised of only medicalized conditions. In browsing through the list of entries alphabetically, one comes across Ableism, Accessibility, Acute and Chronic Conditions, Activism, Advocacy, and Aesthetics; and in glancing at the broader topic areas, one encounters examples such as Accessibility, Arts, Biography, Children and Infants, Deafness and Deaf Culture, and Disability Studies. Even in their brief engagements with the text, readers will get the sense that this encyclopedia presents disability as a lived experience in all its complexities, and not a compendium of pathologized conditions.

Rachel

Your arguments are persuasive, and I concur that the encyclopedia is certainly not a compendium of pathologized conditions, but that it instead represents a broad and comprehensive range of topics and positions. And indeed, any reader who chooses to spend time perusing the five volumes will soon understand that the disability community is comprised of a multifaceted and complex set of people, ideas, and agendas, some of which intersect, but many of which are contradictory and conflicting. The encyclopedia displays this well, its numerous contributors representative of the highly contested and multidisciplinary nature of the field of disability.

Perhaps the best manifestation of the sociocultural, political, and historical nature of disability can be found in the fifth volume. Organized by era within a long period of history, and spanning the globe, Volume V is an impressive collection of primary sources and images related to disability. Albrecht wrote, "These images illustrate the powerful representation and symbolism of disability in diverse societies" (p. xv). Indeed, when scanning the pages of this volume, one is made acutely aware of the wide variety of stances and attitudes with which different countries and societies have approached their disabled members. Stiker (1997) wrote, "A society reveals itself by the way in which it treats certain phenomena. The problem of disability is one such phenomenon. To speak at all pertinently of disabled people is to disclose a society's depths" (p. 14).

With artifacts that range from a Sumerian proverb written in 2000bce to modern-day movie stills and disability rights protest banners, Volume V illuminates much about the ways that disability has been perceived and conceptualized across time and place. In so doing, it reveals the complex and contentious nature of disability and discloses the many different beliefs and frameworks that have been used to describe and represent disabled people.

However, I am still left wondering whether this complexity is explicit in the encyclopedia's individual entries. Do the authors in fact explicate their decisions and positionings as the editors requested them to do? As I browsed the encyclopedia, I found very few entries in which the authors disclosed their theoretical leanings or revealed their own credentials with regards to the topics they were explaining. Many authors provided detailed historical backdrops on their topics, but rarely did contributors "present the various positions and their rationales" (p. xv), as the editors evidently asked that they do. More often, they elucidated their topics with nary a mention of the perspectives from which their explanations were derived. Those authors who did reveal their standpoints tended to be those who highlighted a DS perspective, while those who utilized a medical model rarely explicitly revealed their positions.

You wrote that the purpose of an encyclopedia is not to legitimize a single perspective, but rather to reflect current thinking from multiple perspectives. While I agree with you that ideally an encyclopedia should provide a range of theories and perspectives such that no one truth is legitimated within its pages, I maintain that most readers assume that encyclopedia entries are written within a common framework–one that is "neutral" and reveals the unbiased truth. People look to encyclopedias for facts and for information, not to broaden their awareness of different theoretical perspectives or to question the very notions of truth and validity. For this reason, the fact that the contributors to the Encyclopedia of Disability represent a range of theoretical perspectives but are seldom transparent about those perspectives remains troublesome to me.

Jean

I share your concern that not all of the authors readily acknowledge their grounding assumptions and beliefs. Perhaps out of respect for individual authors, the editors could only encourage, not force, contributors to explain their positions. But I think explicating theoretical stances is only one way to challenge the legitimacy of seemingly neutral or unbiased accounts. By creating space for topics that may not be commonly considered as significant in disabled people's lives, the Encyclopedia of Disability broadens traditional notions of what qualifies as legitimate knowledge.

As Albrecht clarified in the "Introduction," the process of identifying topics for the entries involved perusing major journals, books, government documents, and Web-based disability discussion groups around the world. Consequently, not only are medical and legal categories included, but also thematic units such as the Arts, Experience of Disability, Politics, Religion -- entries that convey the point that knowledge about disability is mediated through multifaceted, social experiences. For example, by incorporating an entry such as Advertising (four pages long), the editors acknowledge that representations and metaphors in the media help shape cultural norms and understandings of disability. Such entries support critical stances advocated by disability communities that medical, technological, and legislative advances are part and parcel of meaningful inclusion of disabled people in society (Fleischer and Zames, 2001). So while I agree with you that individual entries may not adhere to a DS perspective, I think the encyclopedia, as a whole, offers resourceful and valuable information that contributes to the knowledge base for disabled people, their allies, and the general public.

Rachel

I agree that the breadth of topics covered in the Encyclopedia of Disability is impressively wide-ranging. Indeed, the entire set is itself a tribute to the sheer number of topics of particular relevance to disabled people. Yet, in reality the list of issues that affect disabled people could be extended ad infinitum. Each disabled person is a unique subject marked by a distinct combination of influences and identities, the constellation of which makes her unlike any other person, disabled or not. Perhaps in the end I am wary of the very notion of an Encyclopedia of Disability that purports to offer a basic, but "clear understanding of the definitions, fundamental concepts... experiences, health care issues... helpful accommodations, social movements... theories and practices in the disability arena" (p. xiii). There will never be a resource about disability that is truly comprehensive or that in fact provides a clear understanding of the disability arena. I worry that this attempt at doing so–packaged in the glossy and authoritative veneer of an encyclopedia–may be misleading to readers and in some instances may curtail a more thorough understanding of disability. Certainly, those entries that offer a one-sided, medicalized, and simplistic take on a particular category or phenomenon are especially egregious in their tendency to essentialize the experience of disability. However, in its attempt to describe and provide an overall understanding of disability, the Encyclopedia of Disability may itself be guilty of essentializing disability and hampering our awareness of the true complexity that disability entails. In the end, as I consider the potential readers of this encyclopedia, I remain unconvinced that the compendium is a useful tool or a learning resource.

References

Fleischer, D. Z. & Zames, F. (2001). The disability rights movement: From charity to confrontation. Philadelphia: Temple University Press.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.

Stiker, H.-J. (1997). A history of disability. Ann Arbor: University of Michigan Press.


Part III
Carrie Snow, Doctoral student
Teachers College, Columbia University
Email:
ccs2017@columbia.edu

I approach this review from a variety of positions: 1) as an educator of students labeled on the Autism Spectrum (AS), 2) as an individual who earned an undergraduate degree in psychology, 3) as a person whose graduate studies in education have affirmed a long-harbored suspicion that students labeled with disabilities are far more than their labels might suggest, despite what psychological definitions may lead us to believe, and finally, 4) as one who relies on the elements of aesthetics and art in order to enrich and make meaning of lived experience. It is important to note that my graduate education has catalyzed my ability to view my students holistically. More specifically, using a Disability Studies (DS) perspective allows me to know students in terms of their strengths and their vulnerabilities and gives me the freedom to look beyond the often- damaging deficit orientation of disability that characterizes the fields of science, medicine, and special education (Biklen, 2005; Heshusius, 1989; Linton, 1998; 2005).

A sense of promise colors general editor Albrecht's introductory remarks and engaged my initial interest in the encyclopedia: "...the encyclopedia seeks to demonstrate that our largely negative view of disability must be challenged by the significant contributions to all cultures made by disabled people and committed allies..." (p. lxiiii). With Albrecht's words in mind, I looked forward to reading across topics to see the ways in which authors sought to move away from popular conceptions of disability.

Browsing the volumes, I immediately noticed the lack of a unified voice, tone, or theoretical framework within the various authors' contributions. Reading through the sections on Asperger Syndrome (AS -- also known as a form of Autism) and autism, for instance, I was struck by the distinct ways the two authors describe these classifications. Both use the clinical DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, 4th edition) definitions for AS classifications in their sections; however while the first author (Aitken) depends on medicalized language (e.g. diagnostic criteria, differential diagnosis) layered upon a brief historical background of Hans Asperger in his description, the second author (Stone) expands the discourse beyond medicalized terminology. Of particular significance is her note that "any accurate account of autism necessitates the voices, thoughts, and experiences of autistic individuals" (p. 146). I felt affirmed that the encyclopedia would stray from an expert-driven take on disability upon reading the latter author's description of autism, but disheartened by the former author's pathologized view.

As I grappled with the implications of the encyclopedia's wavering perspective on autism, I stumbled upon the vast sections in Volume V citing primary sources such as scripture readings, films, plays, artwork, literature, and other dramatic, artistic, and alternative representations of disability. Far from espousing a medicalized view, these vantage points create opportunities to engage readers' aesthetic sensibilities and imaginative potential as they stretch the meanings traditionally attributed to disability. One of the texts offered as a reference to the theme of "Culture and Resistance" is Michael Berube's Life as We Know It: A Father, a Family, and an Exceptional Child (1996). In this book, Berube explicates the details, both routine and philosophical, of raising a young child with Down Syndrome. The story is authentic in its ability to show that disability cannot be defined using medical terms alone. Rather, the medical aspect of disability is one of many factors in the whole of Berube's son Jamie's lived experience.

The encyclopedia pushes me to acknowledge the various stances I have taken toward disability in my own life and to remind me that a variety of perspectives is part and parcel of a democratic culture. As a psychology student trained to understand the DSM-IV as objective truth, moved on to being a doctoral student and teacher of students labeled on the AS who has learned to see beyond labels, I have, at different stages in my life represented many of the perspectives taken in the encyclopedia. In addition, as one who engages in artistic endeavors, I understand the creative elements that authors refer to in Volume V to be a reminder of the power that the imagination plays in our ability to create a more inclusive and equitable social climate.

References

Biklen, D. (2005). Autism and the myth of the person alone. New York: New York University Press.

Heshusius, L. (1989). The Newtonian mechanistic paradigm, special education, and the contours of alternatives: An overview. Journal of Learning Disabilities, 22, 403-413, 416-419.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.

Linton, S. (2005). My body politic: A memoir. Ann Arbor: University of Michigan Press






Copyright (c) 2006 Kathy-Anne Jordan, Rachel Oppenheim, Jean Y. Wong, Carrie Snow



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