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
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 “warwounded”
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
Citation: 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. December, 2017.
