Patrick Devlieger, Beatriz Miranda-Galarza, Steven E. Brown, Megan Strickfaden, eds. Rethinking Disability: World Perspectives in Culture and Society (Second Edition). Antwerp: Maklu, Garant & Cyclus, 2016. 514 pp. $58.00 (paper), ISBN 978-90-441-3417-9.
Reviewed by Celeste Sharpe (George Mason University)
Published on H-Disability (December, 2017)
Commissioned by Iain C. Hutchison (University of Glasgow)
Rethinking Disability: World Perspectives in Culture and Society is a substantial edited collection of essays showcasing different approaches to the study of disability in culture and society. The four editors—Patrick Devlieger, Beatriz Miranda-Galarza, Steven E. Brown, and Megan Strickfaden—pursue an ambitious goal of demonstrating current theories and approaches to considering disability while indicating how they see the trajectory of disability studies in a transmodern world. Their unifying concept for this wide-ranging volume is “disABILITY MUNDUS,” which they define as “world perspectives on disability that are of a contemporary nature, in which we explore contextualization of disability in history, through the material and immaterial, its expressions in culture and society, its local and global nature, its educational context, and its trans- and post human contexts.” This framework, they argue, creates “a unifying disciplinary perspective ... that is comparative and intercultural” (p. 13).
Chapters are arranged in five thematic sections. Part 1 “suggests ways to revise and renew the field of study through a more decentered and plural exploration” (p. 20). Parts 2-4 highlight how that might look in areas of study such as representation and performance, local and global citizenship, and teaching and learning, respectively. The volume concludes with suggestions for furthering the theoretical perspectives of disability in the transmodern, and how knowledge producers can “get at the complexity of disability” (p. 20).
Part 1, “Disability Histories and Sociocultural Foundations,” begins with a selection of theoretical and historical works that provide the basis for the rest of the book. The stated goal of this section is to suggest “ways to revise and renew the field of study through a more decentered and plural exploration” in the twenty-first century, and this section acts as the springboard for parts 2-4, which deal with studies in more topically specific areas (p. 20). The essays in part 1 include Gary L. Albrecht’s examination of cultural values and the complexity of value structures, and the resulting conflicts among disabled and abled communities; Sharon Barnartt’s discussion of the applicability of role theory for studying complexity of disability identity; James Charlton on the geography of disabled people and their lived experiences on the periphery or “borderlands” of society; Michel Desjardins’s analysis of sexuality and intellectual disabled people; and Robert A. Wilson and Joshua St. Pierre’s genealogy of eugenic thought from the early twentieth century to the present day’s “eugenics logic” as evidenced in debates on prenatal screening and selective abortion.
Part 2, “(Re)presenting and Performing Disability,” addresses individual and social ways of constructing disability in strikingly different contexts. Stuart Blume details an auto-ethnographic account of the ethical divisions related to cochlear implants in deaf communities in the Netherlands. Gregor Wolbring examines ability performance and scholarly challenges in the field of disability studies and argues for an expanded definition of ableism “to not just look at what is wrong, as one often does in disability studies, but to be part of ability studies which is the study of how we, as individuals or social structures, come to favor certain abilities and how we make trade-offs between different abilities” (p. 146). Megan Strickfaden focuses on photographs by blind photographers as examples of challenges to broader assumptions that blindness (and other disabilities) have a “single sense of being” (p. 161). Rosemarie Garland-Thomson proposes “misfit” as a new critical concept to describe lived identity and experience of disability that “emphasizes the particularity of various living embodiments” as opposed to the theoretical generalized disabled body and “confers agency and value on disabled subjects ... by highlighting adaptability, resourcefulness, and subjugated knowledge” (p. 165). Jori De Coster describes how a group of mostly disabled people (in French, they’re referred to as personnes vivant avec handicaps, or "pvh") in Kinshasa, Democratic Republic of Congo, creates spaces for art and interaction through the performances of two theater groups.
Part 3, “Local Meets Global, Global Meets Local,” is a more closely related section than the previous one. Paula Campos Pinto’s essay outlines the implications for a rights-based approach to disability in international policy—namely the United Nations Convention on the Rights of Persons with Disabilities—and research. The other four essays in this section present case studies that deal with with the formation of, and relationship between, local and global communities of disability: emergent communities in digital spaces for people with multiple sclerosis (Gerald L. Gold), critical consciousness among Indonesian disabled and leprosy affected people (Beatriz Miranda-Galarza et al), issues of belonging for institutionalized children with visual impairments in Lebanon (Maha Damaj), and national memory and “war-wounded” or amputees in the Sierra Leonean context of reparations (Maria Berghs).
Part 4, “Constructing and Transitioning Through Pedagogy,” examines how the “projects of normality and assimilation are shared between conventional educational educations and those targeting children with disabilities” (p. 296). Philip M. Ferguson and Dianne L. Ferguson use the example of their son Ian’s experiences with independent living and community inclusion, and their own perspectives as his parents, to highlight the usefulness of a relational approach to disability. This approach would then elide “the essentialism implicit in the assumptions of the dichotomy” between “difference” and “sameness” (p. 312). Adolfo Ruiz and Megan Stickfaden discuss the film Light in the Borderlands (2013), which follows three people, documenting their lives at the borderland of blindness. Tanya Titchkosky interrogates the notion of “access” as “space of say-able things where questions of embodiment can be pursued” to demonstrate how narratives of exclusion can be disrupted and remade (p. 343). Serge Ebersold traces transitions to adulthood and current disabling effects of education systems; he suggests that an approach to pathways that address factors independently fails to account for the dynamic interconnectedness of legal, organizational, technical, and social factors. Lastly, Josephine Hoegaerts examines hearing normalization in the nineteenth century, and points out that practices of exclusion for deaf children mirrored other forms of institutionalizing children “carried out in order to allow for a process of assimilation and future inclusion” (p. 296).
Part 5, “Transmodern, Transhuman and Posthuman Explorations,” explains how the editors envision disability studies theories advancing in the era of scholarly transmodernism. They put forward what they see as the “central question of the transmodern”: “can we get at the complexity of disability?” (p. 385). Patrick Devliger starts this section with a brief examination of the shortcomings of his earlier intellectual position on the “why” of disability in order to underscore the need to consider new contexts—“multiple regional centers of influence, engagement with the modern as omnipresent and exchangeable,” and crossing boundaries (p. 396). Ine Gevers’s curatorial research examines disability in the context of science fiction films like The Matrix (1999) and the international art exhibit Niet: Normaal: Difference on Display (2010) to question binaries of difference. Ingunn Moser details how power relations and inequalities are enacted through material structures and power, while working to unsettle expected notions of significance to events, incidents, and realities. Sharon V. Betcher presents “the seemingly disparate concepts of disability, religion and ecology as a critique towards environmental and religio-theological motivations” (p. 386). Pieter Verstraete and Ylva Söderfeldt’s essay delves into the history of finch sport in nineteenth-century Belgium, which involved blinding the birds; the authors show how conversations around civilization, good behavior, and human blindness effected a change in the law and sport to ban the blinding of finches. Gregor Wolbring investigates the utility of ability privilege as a lens for better understanding privilege hierarchies as they emerge in the future and along different axes. Steven E. Brown concludes the volume with a retrospective on five predictions for disability culture, and predictions for the next ten years that center on how rapid changes in technology, and the United States’ slow adoption of international law open questions about what advances and related developments will transpire.
It is important to note that this is a second edition and an updated collection. The editors discuss how the first edition centered semiotics and the cultural model of disability. In shifting away from the limits of those previous cornerstones, the editors argue that “disability has the potential to create transformations.... In this edition, the radical presentation of disability as a resource, and a creative source of culture, that moves disability out of the realm of victimized people, or as an insurmountable barrier, remains as central to our current exploration of disABILITY MUNDUS” (p. 19). I appreciate that the editors took the time to discuss how their own thinking about the study of disability has changed, and consequently, how that has influenced how they conceived Rethinking Disability. What is less clear is a sense of how the essays might or might not have been changed in the interim. There are hints in the introductions to the book and to the thematic sections, such as the identification of Desjardins’ essay as a useful holdover to remember the moment in time at which that scholarship was written, but the editors have largely left unaddressed the questions about which essays are original to the first edition, which to the second, and which have been updated in the interval. This results in some uneven sections, such as part 4, and a lack of thematic coherence between essays.
The authors express a desire for multiple audiences, including “academic audiences who are novices, experts, students, and teachers, and champions of disability who are advocates, inventors, and policy writers,” but the implicit goal is really to “inspire and train researchers” within academia (p. 15). As an instructional text, the length of the book might prohibit its adoption. The breadth of topics, themes, and approaches encompassed in the volume is impressive and serves as a valuable resource for those looking to do interdisciplinary work on disability. On the other hand, the wide-ranging approaches render it challenging to assign in either undergraduate or graduate coursework. Instructors are unlikely to meaningfully use the entire book, but could successfully assign certain parts or essays depending on the orientation of the course of study. Overall, Rethinking Disability provides a rich starting-point for scholars newly interested in disability studies and culture, and points of conversation for those working to further the field.
If there is additional discussion of this review, you may access it through the network, at: https://networks.h-net.org/h-disability.
Celeste Sharpe. Review of Devlieger, Patrick; Miranda-Galarza, Beatriz; Brown, Steven E.; Strickfaden, Megan, eds., Rethinking Disability: World Perspectives in Culture and Society (Second Edition).
H-Disability, H-Net Reviews.
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