Book Review: Handbook of Disability Studies
Albrecht, Gary L., Seelman, Katherine D., and Bury, Michael, Eds. (2001) Handbook of Disability Studies, Thousand Oaks, CA.: Sage Publications. 852 pages, including Author and Subject Indexes.
Reviewed by Corinne Kirchner, Ph.D., Director of Policy Research & Program Evaluation, American Foundation for the Blind (Corinne@afb.net)
Defining Terms
It is intriguing to consider this hefty and valuable volume edited by Albrecht, Seelman and Bury in light of Merriam-Webster's Collegiate Dictionary's (1993, p. 526) definitions of "Handbook." First, we learn that a handbook is "a book capable of being conveniently carried as a ready reference." If you focus on portability, the term is a colossal misnomer in this case. At more than 850 pages, 8.5" by 11" dimensions, a sturdy hard cover, and weighing in at - well, no, I did not actually weigh it - this book can be conveniently used only by carrying it as little as possible.
Fortunately, I can recommend that you should clear a space on or near your desk for your copy of the Handbook of Disability Studies (henceforth, The Handbook) to remain, serving as a "ready [albeit, nonmobile] reference." The book's physical heft is matched by its intellectual content; thus, it comes closer to meeting the latter half of the dictionary's second definition of "Handbook", i.e., "a concise reference book covering a particular subject." The following review attempts - within the limits of this reader's disciplinary competence applied to a robustly multi-disciplinary compilation - to assess the book's coverage of the domain that has only recently emerged under the rubric "Disability Studies."
Interdisciplinary Perspectives
My intent should be defined even more modestly. I will mainly describe rather than assess the book's adequacy of covering its domain. My few evaluative observations necessarily concern relatively narrow issues, given the scope of this document. Nothing short of a team of reviewers could do justice to assessing the material from as many disciplines as inform the book's 34 chapters, contributed by nearly 50 authors. At the risk of overlooking some ways that the authors' disciplinary expertise could be labeled, here is an overview of its diversity: Anthropology, Bioethics, Communications, Cultural Studies, Demography, Economics, Education, English, Epidemiology, Information Science, Law, Philosophy, Physiotherapy, Political Science, Psychology, Public Health, Rehabilitation Counseling, Rehabilitation Engineering, Social Work, Sociology, and Special Education. Arguably, a plurality of the authors could be classified as sociologists, which is this reviewer's field of training. However, the diversity of methodology and substance represented among even that subset of authors is such that my disclaimer still applies.
Clearly, students and researchers in at least the array of specialties just itemized will find some issue or question stemming from their own domain to draw them into this Handbook. They will probably be rewarded with answers but, perhaps more importantly, with new questions to guide their further reading and research. The editors have done a thorough job of ensuring that authors offer explicit suggestions for research directions in the future as part of each chapter's concluding section.
No matter how broadly defined is the group of academic disciplinary specialists (including students) who can find material directed to their expertise in this book, that could be a too narrow way to define the potential audience. Staying with the academic group for the moment, it should be obvious that the value they can find is not limited to reading chapters by their fellow specialists, but expands to the extent they take advantage of cross-cutting treatments of the same general material by authors from other perspectives.
Does it make sense to go beyond the academics and encourage others also to dip into this Handbook? I would say "yes," advisedly, in declining order of assurance when it comes to the following categories of potential readers: applied researchers, policy makers, disability activists, and professional service providers. Why "advisedly"?
First, being realistic, the operative phrase of that recommendation is "dip into." In other words, however much one might exhort non-academic readers to partake of the enlightening riches offered throughout the book, that would be a hard sell given both the action-oriented culture and related time pressures they work within. However, it is not hard to argue that one or a few chapters could provide truly useful general orientation and/or specific insights for readers whose prime interest rests in pursuing action - especially in the policy areas of health care, income benefits, employment and technology (see below).
Having said that, the heft of both the physical document and its price could be deterrents for the reader with highly selective interests. The logical solution in that case is to hope that the Handbook will become widely available in libraries that are accessible in every sense of the word. For potential readers among disability activists, that could mean that Centers for Independent Living would see this as a worthwhile investment. Is that likely? Judging by representation on The Handbook's Editorial Advisory Board, very few nonacademic advocates are informed enough about the intent and content of the work to make that case. A stronger voice might help to place this resource in libraries of government and private nonprofit agencies.
International Perspectives
Besides academic disciplinary variety, the expertise required to assess information in the Handbook would need to be diverse in international terms as well.
Starting with "Acknowledgments," where the genesis of The Handbook is attributed both to the civil rights movement in the U.S., and to the international human rights struggle (p. ix), right up through the closing chapter (Ingstad's "Disability in the Developing World," pp. 772-792), an international perspective pervades. However, in some chapters - such as Lollar's "Public Health Trends in Disability: Past, Present, and Future," (pp. 754-771) - the international angle refers mainly to international bodies like the World Health Organization and the World Bank, rather than comparatively to specific countries or world regions. Lollar's chapter analyzes the U.S. public health sector, as it has been influenced by its homegrown disability community; the chapter's framework, one hopes, will stimulate comparable analyses stemming from other countries with different public health and disability structures and contexts.
But many chapters do undertake a comparative approach in which national or regional and cross-national cultural and/or economic processes are identified. In fact, most chapters in the third and last section of the book, titled "Disability in Context," take up that challenge.
Treat the Structure Lightly
As just indicated, The Handbook's structure consists of three broad sections : I- "The Shaping of Disability Studies as a Field"; II - "Experiencing Disability"; III- "Disability in Context." The editors' explanation for this set of categories is satisfactory, but in practice, it seems to me many chapters could just as well be placed in one or both of the other sections. On reflection, that comment refers less to a weakness of the classification than to the strength of a quite consistent framework that pervades most chapters. In other words, throughout most of the writings, experiential information is valued and disability phenomena are viewed as deriving from contexts external to the individual. Furthermore, a case could be made that all the chapters contribute to shaping the new field - and the authors undoubtedly were aware of that as they constructed their papers.
I did spend a little time considering alternate possible structures, and playing with re-allocation of some chapters so that the existing structure would seem more defining, but soon decided those exercises were not productive. The bottom line is simply that readers should not allow the section headings to deter them from seeking material relevant to each heading in any of the sections.
Having pointed out that the themes highlighted in the section headings are pervasive, I nevertheless detect a slight imbalance: the experiential perspective seems less well-represented than the contextual one, even in chapters placed in Part II. But I offer that judgment with considerable hesitancy, recognizing that what qualifies as "truly experiential" or "truly contextual" is debatable. Certainly Chapter 18 ("Health Care Professionals and Their Attitudes toward and Decisions Affecting Disabled People") powerfully develops both perspectives. The physician-author, Ian Basnett, incurred spinal cord injury years after he had been in practice, and pinpoints how professional socialization of typical nondisabled health care professionals creates a negative context for patients/clients with disabilities.
And Gill's chapter on "Divided Understandings" undertakes a needed systematic review and development of how academics and service providers have characterized "the disability experience." She sets a solid stage for future research on the still-radical notion of positive disability experience.
These and other examples demonstrate that the experiential perspective is certainly not absent from the compilation.
Examples of the Contextual Perspective
The remainder of this review touches on a consecutive set of chapters in Part III, chosen rather arbitrarily. Ostensibly, these chapters were grouped in the Handbook because they all illustrate comparative cultural analysis, but I also detect a useful progression from one to the next that can contribute to understanding institutional linkages affecting disability policy. Indeed, I suspect this selection of chapters would be especially appealing to non-academic readers -- consumer activists and/or policy-makers - seeking to inform themselves with action goals in mind.
DeJong and Basnett in "Disability and Health policy: The Role of Markets in the Delivery of Health Services" (Chapter 26) invoke the comparative approach as applied to national economic systems. Although the approach may be familiar in health services research, the authors offer an innovative angle by starting from the perspective of the social movement around disability issues. They point out that the movement's leaders in many countries "bring conflicting views about the role of health care in the lives of people with disabilities" (p. 610) This leads to a review of historical changes and cultural factors affecting disability activists' role in formulating health policy, before the chapter plunges into its main substance - cross-national comparisons of recent policy developments.
O'Day and Berkowitz, in "Disability Benefit Programs: Can We Improve the Return-to-Work Record?" (Chapter 27) provide a concise comparison of national income benefits programs, highlighting the rationale and aims of recent U.S. legislation promoting return-to-work. The disability movement perspective is acknowledged with reference to the changed policy environment regarding employment and health insurance because of the Americans with Disabilities Act.
Next, Schriner's chapter (28) "A Disability Studies Perspective on Employment Issues and Policies for Disabled People: An International View," uses the disability movement's perspective to inform an extensive discussion of factors that support or challenge the emergence of "transformative rehabilitation practice" - rehabilitation that addresses societal barriers rather than individual limitations.
And finally, for this selective review, Seelman's "Science and Technology Policy: Is Disability a Missing Factor?" (Chapter 29) provides a contextual analysis that might at first glance seem more academic than practical, in part because of its impressive scholarship. But it would be a mistake not to realize that policy makers and even consumer advocates equipped with insights that this chapter provides about, e.g., the role of gender, culture and class in professional training of scientists and engineers, or changing models of research, can much more effectively ensure that science and technology will serve the self-defined needs of people with disabilities. Usability
Especially for academic readers, but not only for them, the Handbook is potentially a resource to which they may turn often. That leads me to comment on two features that can greatly affect a book's utility as a reference: the bibliography and the index, and to close with the practical question of accessibility for people with print-reading disability.
In regard to the bibliography, the book is a goldmine. Authors generously reference their sources, which include not only other scholarly publications, but also consumer advocacy outlets, e.g., Disability Rag (now called Ragged Edge), legislative acts, and other primary documents of significance to this emerging field of study. Almost like mining for gold, the reader has to do a bit of work, since each chapter has its own listing of references, and there is no overall bibliographic list. There is, however, an "Author Index" that runs to almost 20 two-column pages. Page numbers in the Author Index refer to abbreviated citations embedded in the text; page numbers that refer to the full bibliographic information are not given in the Author Index. For that, one goes to the end of the respective articles and searches. Undoubtedly that way of doing it conforms to publishers' common practice, but I nevertheless wish there were one overall bibliography, and/or that the Author Index listed the page numbers for full citations.
Finally, the "Subject Index" - 28 pages of double-column entries - is almost doomed to be somewhat disappointing. One can imagine that a truly comprehensive index of terms and concepts used in the nearly 800 pages of text would fill a large volume in itself. I have used the index for several topics and did find relevant mentions, but of course I was not able to assure myself that all relevant mentions were indexed. I have also attempted to find a topic that did not appear in the index, leading me to think it was not discussed at all, whereas at a later time I encountered it while reading a chapter. (To be specific, the topic is "Adjustment to disability," or "Disability Adjustment"; the discussion appears in Carol Gill's chapter.) Probably, the solution to the indexing problem for such a large volume will come only when such documents are disseminated electronically.
That point leads to the question of how potential readers of The Handbook who have print-reading disability will be able to access the volume. (Authorization to use an electronic version could be a solution.) Since some of the authors are blind or visually impaired, one might presume, or at least hope, that a print-alternative version of the whole document exists, but this reviewer found no reference to what it is, or how to get it. From the point of view of creating an accessible version, it is fortunate that there is very little non-text material (e.g., charts, graphs, pictures).
Indeed, the only picture is the striking reproduction from classic art that adorns the handsome cover. The editors anticipated that the choice of art could be controversial, and explain their perspective. Their rationale reflects the theme for the whole undertaking, and is a meaningful note on which to close this review:
This painting signifies that disabled people have a value and place in society, that disability and intergenerational relations have been important across history, and that disability is to be understood in its historical and cultural context....Continuity and hope are expressed....(p.4)
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