Book review: rethinking geographies of disability.
|Article Type:||Book review|
|Subject:||Books (Book reviews)|
|Author:||Vickers, Margaret H.|
|Publication:||Name: Journal of Health and Human Services Administration Publisher: Southern Public Administration Education Foundation, Inc. Audience: Academic Format: Magazine/Journal Subject: Government; Health Copyright: COPYRIGHT 2011 Southern Public Administration Education Foundation, Inc. ISSN: 1079-3739|
|Issue:||Date: Fall, 2011 Source Volume: 34 Source Issue: 2|
|Topic:||NamedWork: Towards Enabling Geographies: "Disabled" Bodies and Minds in Society and Space (Nonfiction work)|
|Persons:||Reviewee: Chouinard, V.; Hall, E.; Wilton, R.|
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
|Gale Copyright:||Copyright 2011 Gale, Cengage Learning. All rights reserved.|