Book review: rethinking geographies of disability.
Vickers, Margaret H.
Book Review of: Chouinard, V., Hall, E., & Wilton, R. (Eds.)
(2010). Towards Enabling Geographies: "Disabled" Bodies and
Minds in Society and Space, Surrey, England, Burlington, VT, USA:
Ashgate Publishing. ISBN: 9780754675617 (Hbk). 9781409403197 (ebk).
As a long standing researcher in the field of chronic illness and
disability, I found this edited collection of chapters to be
interesting, refreshing and informative--a most useful contribution to
the disability literature, and a timely return to the endless and vexing
questions surrounding the geographies of disability. What also pleased
me greatly about this particular volume as a long standing qualitative
researcher myself, was the utilisation of the numerous qualitative
empirical studies to support many of the key arguments being made,
drawing attention to areas of scholarship that have previously been
neglected, uncritically or insufficiently examined, or ignored
altogether. Qualitative research is especially valuable when exploring
uncomfortable, undiscussed or otherwise painful subject matter, enabling
expeditions into such domains in an effective and sensitive manner,
while identifying and sharing the salient elements of people's
experiences in a way that offers a "ring of truth" that can be
less discernable in larger, more generalisable, quantitative
presentations. Never was that more the case than with the materials
shared here.
As I delved into the volume, I found much to hold my interest. The
introductory chapter by the editors immediately engages the reader by
highlighting the need for scholars to return to key questions in the
field: disability; embodiment; identity; disability and space in
everyday life; technology and disability; and politics and policy. They
propose that this volume raises as many questions as it answers through
the critical evaluation of the previous work of disability geographers,
along with their inclusions of relevant empirical work. The editors also
draw our attention to the insufficiency, even absence, of critical work
surrounding many issues pertaining to disability geographies, especially
those going beyond urban and Western contexts, while also highlighting
the lack of attention to policy issues and policy-relevant work, and the
need to re-engage with notions of able-bodiedness and able-mindedness.
In Chapters 2 and 3, Rob Imrie and Valorie Crooks respectively, and
respectfully, turn our attention to questions surrounding living with
disability and home life. Imrie reminds us that a person's mental
and physical well being can be directly related to the quality of their
dwelling and home environment while concurrently pointing out that the
design of dwellings often falls far short of being suitable to the needs
of those with disability, even after modifications have been made. Imrie
confirms that the design of our homes is rarely made with notions of
disability, disease, impairment or illness in mind--highlighting just
another area where the impaired body is rarely a subject of critical
comment or analysis. The testimonials in Imrie's chapter confirm
the tensions still present between ideal conceptions of home and the
reality of a life lived in such a home by a person with disability,
confirming that the usual notions that combine with an "ideal"
home, such as privacy, safety, security and comfort, are not to be
relied upon for those with the onset and development of a significant
bodily impairment. Crooks' Chapter 3 continues in this vein,
highlighting the highly gendered nature of the space that is the home,
including the gendered nature of what might happen there. She
demonstrates how the onset of a chronic illness, in this case
Fibro-Myalgic Syndrome (FMS) and its attendant chronic pain and fatigue,
can result in bodily impairments which diminish women's abilities
to fully participate in home life in the expected and/or desired ways,
in terms of both society and space. Crooks usefully explores
disablement, embodiment and coping within the context of the home
presenting data from qualitative interviews that explore women's
altered experiences of home, and life inside the home, after the onset
of chronic illness.
Chapters 4 and 5 explore aspects of internet use for people with
disabilities. Chapter 4 finds Davidson and Parr considering how virtual
space may help constitute particular geographies of difference examining
the experiences of those with autism, and those with mental health
problems, respectively, and their experiences of using the internet.
Davidson and Parr offer a critical exploration of the differing
experiences of these two distinct groups with regards to the internet,
specifically as this becomes a consideration with their respective and
differing impairments. For those with autism syndrome (AS), internet use
was reportedly experienced as usually being accommodating and useful.
However, for those with mental health problems, the use of the internet
was reported by respondents to feel dangerous, and was even reported to
be encountered by them as being a disturbingly intimate and
discomforting psycho-social space. This comparative analysis is useful
in allowing readers to return to a more critical evaluation of the
internet and its use, recognising the internet as a complex technology
configured in different and complex ways, and one which can result in
widely varying outcomes for users, depending on the individual and any
impairment they may or may not have. Skelton and Valentine continue the
consideration of technology for those with disabilities in Chapter 5,
exploring the use of the internet specifically for those with hearing
impairments. They examine how D/deaf people use the internet, how online
practices might be affecting D/deaf peoples' information capacities
and social relations, and they consider how D/deaf people's
abilities might influence that person's capacity to make full and
effective use of the internet. Skelton and Valentine's findings
confirm that the D/deaf person's use of the internet can
drastically improve that person's individual information
landscapes, giving them new capabilities and wider knowledge sources.
The lives of people with intellectual disabilities are examined in
a nuanced fashion by Andrew Power in Chapter 6. Power recognises that
people with intellectual disabilities are a unique group, often at the
periphery of scholarly enquiry, and often not sufficiently catered to
when considering disability from the social perspective. Power's
chapter usefully teases out some of the complex themes of
interdependence between people with intellectual disabilities and those
who may be involved in their care, such as family, siblings, formal care
workers, members of the public, agencies, mainstream local service
providers and social advocates, by tracing the socio-spatial aspects of
their lives in the community. This chapter uses a social ecology
approach to explore the wider set of relationships that comprise the
caring nexus for those with intellectual disability, suggesting that
there is a place for both "segregated" environments, such as
day centres that are welcoming and less stressful, as well as more
"integrated" spaces in the community.
Chapters 7 and 8 explore disability geographies involving younger
people. Chapter 7 commences with a personal narrative from the author,
Deborah Metzel, which reveals her lived experience of being a long
distance carer of her sister, Charlotte. The chapter offers a powerful
qualitative analysis of issues confronting carers at a distance from
those they care for. This was especially valuable given the
author's combined researcher- and researched-status that was
recognised and interwoven into her qualitative interviews and subsequent
analysis. Chapter 8 offers another in-depth qualitative study that
explores the experiences of young people with emotional and behavioural
difficulties (EBD). Holt suggests that theorising the experiences of
young people through the lens of critical disability studies can more
effectively conceptualise and politicise their experiences, and
contribute greatly to current debates by challenging the dominant
education models. In this chapter, Holt contends that current education
models tend to reproduce the experiences of young people with disability
as individual tragedy models, which effectively contribute to the
exclusion of young people, and their specific concerns, from the wider
political re-signification of disability. Holt confirms that young
people with socio-emotional differences and EBD tend to experience
entrenched disablism in the educational context, such as labelling,
diagnostic processes, exclusion and marginalisation in school
institutional spaces, and routinised contrasting behavioural norms. Holt
argues for a more critical approach to challenge dominant perspectives.
Moving the reader's attention to the workplace, Chapter 9
seeks discussion regarding the potential role of geography in shaping
evaluations of work initiatives that impact on disabled people's
lives, such as those that have operated in the United Kingdom (UK).
Claire Edwards argues that one of the consequences of the focus on
cost-effectiveness that characterises such models of disability
employment support is the way people with disability become constructed
negatively. Individuals with disability become depicted as a cost to
society, with their identities being recast in terms of the associated
technocratic programme-speak associated with such government programs.
Those seeking welfare and/or work via such programs become
"registrants" and "participants" in current
welfare-to-work initiatives. Such a focus, Edwards argues, shifts
attention away from the necessary discussion of the broader barriers and
realities which constitute the everyday lives of those with
disabilities, especially in relation to their work and employment, or
lack of it.
Kruse opens Chapter 10 with a cogent reminder of how dwarfism
continues to remain a societal source of fascination, exclusion and
confusion, reminding us of the myriad of troubling historical references
to mysticism and freak shows, and the placement of dwarfs variously in
royal courts, circuses and institutions. Kruse vivifies the challenges
to identity facing adults of extremely short stature, including the ways
in which dwarfism is understood in cultural terms. Then, drawing from
interviews and participant-observations with a married couple who are
both dwarfs, the chapter explores: (1) ways in which public space is
experienced differently by people with dwarfism; (2) ways in which these
people arrange and adapt their private residential spaces in ways that
challenge dominant norms of height; and, (3) narratives of a family of
people with dwarfism as they reveal ways in which their identities and
corresponding spaces are mutually constitutive.
Chapters 11 and 12 both offer perspectives of those whose
experiences reflect much in common with those marginalised as a result
of some kind of physical, emotional or intellectual disability. Chapter
11 opens with a powerful narrative from "Harriet", a
participant in a study speaking about the disabling affects of fat.
Harriet explains to the researcher, with tears in her eyes, her belief
that her mother would love her more if she were thin, like her sister.
Following the view that it is not actual disabilities or impairments
themselves that disadvantage people's lives but, rather, the social
and spatial structures that take insufficient account of people's
embodied difference, Longhurst makes clear that she is not suggesting a
collapse of the constructs of fatness and disability; rather that there
be some recognition of the common ground between what might be lived by
each of these groups, especially in relation to spatiality and
geography, and their associated shared experiences of biomedical
inscription, pain, social isolation, and political and economic
marginalisation. Longhurst argues strongly that environments, both
emotional and material, can be disabling for fat people and that both
fat people and people with disabilities are oppressed by dominant power
relations that revere slimness and able-bodiedness. Following this
notion, in Chapter 12, Wiles and Allen explore ageing as another form of
potentially exclusionary social and physical difference. While
recognising that a significant proportion of people with disability are
older, they are careful to clarify that they are not defining "old
age" as a disability in and of itself. They argue, instead, that
old age is spoken of with an ambivalence and stigma that those with
disability, or those who study disability, can relate to. They then
argue that the pervasive negative social discourses surrounding old age
are a form of disabling geography, devaluing old age and normalising
negative associations with it. Wiles and Allen then usefully explore
some of the sources of such ambivalence and the way identities of
"old" and "not old" are theorised.
Chapter 13 finds Maddern and Stewart considering the widespread
changes occurring around how mobility is considered and organised
globally, carefully considering associated questions such as the
relationship between those with disability and technology, citizenship
and social inclusion. In particular, they share findings from a
qualitative study that depicted biometric technologies as empirical
examples of ableist ideas, practices and institutions. They highlight
the need to challenge the hegemony of normalcy and associated ableist
assumptions that dominate society, especially given their significant
implications for people with disability. The authors contend that
ableist assumptions of normalcy continue to be constructed; that
marginalised, invisible "others" are considered by many to
have a need to be made "normal" or be able to find ways to do
things in a "normal way". Maddern and Stewart point to such
views permeating the biometric arena and offering another means to
undermine attempts to move towards socially egalitarian outcomes.
Finally, Isabel Dyck shares Chapter 14 which opens by reflecting on
the geographies of disability, commencing with a narrative that raises
thorny questions involving contemporary bioethics. Dyck describes
Javier, just a week old, born as a result of stem-cell selection. It is
revealed that Javier's parents had hoped Javier would provide a
cure for his chronically ill, six-year-old brother, Andres. Careful not
to step into the labyrinth of bioethical debates, Dyck works to draw out
the discussion of the complex threads of ideas flickering in and around
advances in medical knowledge and biotechnology, differences in social
and faith attitudes and values, personal pain and hope in families, and
a renewed recognition of distributive inequalities across the globe.
Dyck concludes by arguing that disability remains a complex site of
theorising, even if many of its politics, bodies and power relations
have been previously well rehearsed.
The editors noted in their Preface to this collection that this
book represented a "second wave" of geographical studies of
disability, aiming to broaden and deepen the conversation around
geographies of disability. They sought, in this volume, to include a
renewed consideration of many of the bodily experiences of people with
impairments and disability, the increasing role of technology in the
lives of those with disability, as well as offering useful inroads into,
and segues from, the current and extant empirical and policy debates
that affect the lives of those with disability, as well as those around
them. The orientation, style and presentation of this work provides a
welcome shift away from what could have been a colourless and unhelpful
discussion of disability in terms of geography, space, practice and
place. Instead, it offers empirics, theory, debate and critical review
designed to promote the conscious creation of more inclusionary and
enabling social spaces. I commend it to you.
MARGARET H. VICKERS
University of Western Sydney