Studying disability: multiple theories and responses, by Elizabeth DePoy and Stephen French Gilson, SAGE Publications, 2011, 250 pp., US$57.00 (paperback), ISBN 978-1-41297-576-6
This excellent book considers and integrates many viewpoints, research studies and epistemic and axiological positions in order to bring consideration to and shed light on many different theories and approaches suggested to students, practitioners, scholars and anyone who is concerned with human rights and diverse bodies in the area of disability. The authors look backwards in history and broadly across the globe to examine the concurrence of disciplines and ideas which, until now, have not been considered complimentary or relevant to disability. The book is essentially designed as a learning tool. It stands as a sequel to Rethinking disability: Principles for professional and social change (2003) written by the same authors. The book is organised into three major sections. The first part provides a historical backdrop and explores the current contextual trends that have been important in shaping the perspectives of and responses to disability. The second part is a theoretical description and explanations of disability, from classical longitudinal views that prescribe desirable human experience to emerging conceptual frameworks that scramble and then reorder the intellectual universe and thus the study of disability. The third and fourth parts are designed to apply multiple viewpoints with the ideological aim of creating a world in which all bodies, not only the fit-ones, are welcomed.
The authors discus the construction of disability starting in ancient Greece, continuing through the middle ages all the way to the 21st century, offering an insight into the idea of constructing disability in every major historical period. Their final thought is that ‘contemporary history leaves us with the body in fragments and thus with the charge to reconstitute the body as the basis for expanding human environment fit, or what we have referred to as full juncture’. Using the word juncture, DePoy and French Gilson explain their view on the dynamics and relationship between the body and social environment where full juncture (overlap) is the ideal. With this concept they try to graphically show the distance between the body and the environment and describe the ideological imperatives that are in place when the body and the environment discourses are closer or farther apart. The overlapping relationship between the world of the ‘body’ and the world of the ‘environment’ is crucial to the two paradigms identified as juncture and the contrary position of separation (defined as disjuncture). With the different stances, the authors try to show the mutual co-dependency and coexistence of the body and environment.
In the next few chapters the authors explain and explore different approaches to the legitimacy of disability. Legitimacy of disability focuses on explanations of description that have been important in defining disability and responses to it, both historically and contemporarily. They touch on longitudinal, environmental, categorical and system explanations of the definition of disability. They state that ‘human description provides the initial foundation on which to begin explanatory analyses, categorization, and legitimate responses to category members’. Description provides maps or taxonomies as the basis of navigating the complexity of human phenomena. Descriptive elements provide perimeters for further inquiry and theorizing about the multiple views that can be applied to human activity.
The authors address the view that disability studies is a field of ethics that integrates goodness of body types and functions and the viability of responses that are afforded to diverse bodies. They propose a number of ethical questions that could begin the debate, which are:
- 1. To what extent and on what parameters should human worth be linked to body appearance, capacity and difference?
- 2. What are the ethical dilemmas of segregated responses due to impairment?
- 3. What alternative, ethical responses, beside segregated responses, should be devised, and how will they be supported with resources?
- 4. What evaluative outcome criteria should be applied to determine the success of distributive solutions?
- 5. What is an acceptable ethic of care for bodies with limited life spans or with limited capacities for contributing to the economy?
Ethical questions are important to the disability discourse. They work not as means to practical solutions but more as conversation starters that force us to consider these topics as overarching paradigms that we follow in our professions and plan strategies and responses to accordingly.
Lastly, in the chapter interestingly titled Fashioning Communities the authors advance synthetic theory and illustrate its application. The main premise is that the ‘good old days’ of monism are over and even though answers from a single perspective are more easily found, we need to search for explanations within a yet to be assembled mosaic of ideas that is awaiting ordering and logical application. In their opinion medical hegemony still reigns supreme in the legitimacy of determination, despite its limited or absent guidance for legitimate responses in so many fields that touch disability.
The authors introduce the concept of ‘full juncture’ as a democratic, creative, post-modern, interdisciplinary and ongoing process. The word disjuncture is defined as a disconnected relationship between body and the environment and juncture refers to a relationship of goodness-of-fit. Thus, advancing beyond the binary debate about disability as either embodied or environmental, disjuncture holds neither element as solely responsible but rather highlights the relationship between the two as explanatory locus. They use the word process because full juncture is something we have not yet attained but is a goal we should reach. They use examples to illustrate responses and embodied characteristics in order to show the creation of disjuncture and disability effectively.
The ideal in the authors’ opinion, and the one that they want to show presenting the full juncture discourse, is removing any disability rhetoric that is connected with ‘not being able’. As an example they use internet pages of two different companies, both working in the field of disability. First is Disabled Sports USA, which even in their mission statement, the term disabled is fore grounded. Implicit within these messages is that the disabled person enters the sports arena to develop the absent or insufficient qualities of independence, confidence, and a well-lived life. As an example of full juncture the authors present the case of Renegade Wheelchairs. As indicated on their website and stated in the logo, these mobility devices are considered to be all terrain sports equipment. The term ‘disability’ does not appear on any part of the website, eliminating the bifurcation of populations into disabled and non-disabled segments and thereby locating their product selection and its use outside of the disability park. In Slovenia where the author of this review comes from full junction is far from being the norm, despite the fact that disability rhetoric is slowly changing. A more equal and supportive narrative rather than the binary opposition rhetoric is practised by Slovenian disability scholars, social work students and by a minority of professionals. On the other hand, the majority of the people still use outdated and power prone wordings, like ‘invalids’ or ‘different children’. It would be of great importance to use language that stresses equality because such tendencies build a bridge for a paradigm shift and a new disability ethics, defined by Jackie L. Scully (2008).
The authors also illustrate that medical hegemony still reigns supreme in the legitimacy of determination, despite its limited or absent guidance for legitimate responses in so many fields that touch disability. They argue that only synthetic thinking and action can meet the tall orders of the 21st century to reconstitute the body and eliminate the disability park while improving our globe for the full diversity depth of humans.
In their words, disability studies have done just that, synthesized interdisciplinary thinking from multiple academic and professional arenas, including humanities, arts, social science, natural sciences, and professions to inform definitions, analysis, and response to disability. I would like to challenge this argument with the thought that disability studies scholars mainly still come from the binary schools of thought on disability, where disability is either a medical-diagnostic or socially constructed. Disability studies scholars rarely take a different stance on legitimacy explanations of disability. The simple explanation for this is that there is not a theory that has been around long enough or strong enough to be as widely accepted as these two theories. Disjuncture theory, as argued by DePoy and French Gilson, holds neither element as solely responsible but rather highlights the relationship of the two as the explanatory locus. Considering disability as a function of both, bodies and of environments, therefore, can bring multiple fields of knowledge to bear on healing disjuncture without dismissing the contribution of either the body or the environment to the explanatory repertoire. As a theoretical and praxis challenge for the 21st century, the authors recognise reconstitution of the body and reconciliation of the medical-constructed binary. They explain the reasons why this challenge is of importance but leave few hints as to how we should go about it. Agreeably this is an important and legitimate challenge that should be taken on, but the tools which would facilitate change seem to have not been created just yet.
Throughout the book the authors try to explain the social construction of legitimacy. Legitimacy theories aim to unclothe and display explicit and tacit values, pluralistic ideas, and power relations that determine authenticity. The authors find legitimacy to be ‘a powerful disambiguating microscope to magnify and clarify why one becomes considered as disabled, the location of disability within social hierarchies, and the responses afforded to category members on the basis of work’. They also suggest that the ‘attribution of legitimate disability status to an individual or group is a dynamic, value-based categorization that has little to do with the atypical description, but rather with judgments and beliefs about the explanations attributed to descriptive elements. They pose a strict distinction between legitimacy approaches and values and argue that the terms are similar but not synonymous. Values designate which descriptions are of interest and fit, giving legitimacy theory its moniker: values are selective and parse explanations of human description that qualify for membership and response from those that do not. The authors propose an interesting thought that one of the main value traits is that a brand assigns value to disability status depending on the explanation that landed an individual as a member. This also corresponds with their chapter on contemporary and emerging explanations where they take design, branding and product design into consideration as some of the venues that should be further explored as the means of closing disability disjuncture.
The book is written with a specific reader base in mind. It is implied to be read by professionals, students and scholars while demanding solid background knowledge of disability studies. It focuses mostly on legitimacy topics and continues to explore disjuncture theory as the main paradigm of thinking about disability. Even though the book tries to explain disability as viewed from a number of different perspectives, the main focus and depth stays within the limits of disjuncture discourse. Practitioners and scholars interested in disability discourse should regard it as an in-depth study of the disjuncture discourse and a brief overview of historical and legitimacy discourse. There are many tables presented in the book illustrating the narratives explained. These are helpful tools that let us quickly examine the key points of the topic at hand.
I see the value of the book as a contribution to the dialogue between the medical and social paradigm on disability. Such dialogue is vital to understanding the complexity of the disability park and encouraging mutual understanding between professionals and creating of a larger, more complex paradigm of everyday life. The authors’ contribution to and progressive explanation of legitimacy theory foster some interesting ‘aha’ moments in the reader and provide a better view of the connections between praxis stances and the upcoming definitions of disability. They state that no single discipline should perpetuate and own the disability park, nor is a single discipline responsible for dismantling it. The shared responsibility between fields and dialogue between multiple paradigms should have been achieved long ago. The authors urge us to contribute towards these changes.
Faculty of Social Work, University of Ljubljana
© 2013, Gašper Krstulović