Disability, Normalcy, and the Everyday

Gareth M. Thomas, Dikaios Sakellariou

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781315446424
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

Many critical analyses of disability address important 'macro' concerns, but are often far removed from an interactional and micro-level focus. Written by leading scholars in the field, and containing a range of theoretical and empirical contributions from around the world, this book focuses on the taken-for-granted, mundane human activities at the heart of how social life is reproduced, and how this impacts on the lives of those with a disability, family members, and other allies.

It departs from earlier accounts by making sense of how disability is lived, mobilised, and enacted in everyday lives. Although broad in focus and navigating diverse social contexts, chapters are united by a concern with foregrounding micro, mundane moments for making sense of powerful discourses, practices, affects, relations, and world-making for disabled people and their allies. Using different examples – including learning disabilities, cerebral palsy, dementia, polio, and Parkinson's disease – contributions move beyond a simplified narrow classification of disability which creates rigid categories of existence and denies bodily variation.

Disability, Normalcy, and the Everyday should be considered essential reading for disability studies students and academics, as well as professionals involved in health and social care. With contributions located within new and familiar debates around embodiment, stigma, gender, identity, inequality, care, ethics, choice, materiality, youth, and representation, this book will be of interest to academics from different disciplinary backgrounds including sociology, anthropology, humanities, public health, allied health professions, science and technology studies, social work, and social policy.

Part I
Disability, normalcy, and the everyday

Chapter 1
Introduction

Disability, normalcy, and the everyday

Gareth M. Thomas and Dikaios Sakellariou

This edited collection brings together scholars from around the world to explore understandings of disability, normalcy, and the everyday. Our concern is with the taken-for-granted, everyday human activities at the heart of how social life is reproduced, and how this impacts on the lives of those with a disability together with their family members and other allies. It is well established within the literature that disability, as a form of embodied difference or body trouble, can trigger personal and social consequences, from stigmatisation to discrimination, from embarrassment to resilience and resistance. In its effort to make sense of such consequences, the literature on disability often aligns with the social model of disability. In its simplest form, the social model treats disablement as a social problem belonging to society; that is, society disables people on account of unequal access to resources. This social model is commonly contrasted with the (bio) medical model of disability which depicts disablement as a biological problem belonging to a person, that is, there is an emphasis on fixing or curing a person. The social model, in contrast, argues that disability ‘has nothing to do with the body’ since ‘it is a consequence of social oppression’ (Oliver 1996: 35).

Much ink has been spilled over the merits and drawbacks of each model, and a range of alternative models (e.g. critical disability theory) have been presented as possible solutions to the shortcomings of the mutually exclusive social and medical models. In this book, we do not intend (or want) to repeat such ideas – nor do we want to be caught up in debates on language, including whether we should say people with disabilities or disabled people; both are used interchangeably here dependent on author preference. The social model of disability has been widely critiqued for its alleged disregard for the physicality of impairment, its failure to take account of difference within the broad category of disability, and for being restrictive and endorsing counterproductive dualisms. While we recognise the importance and potency of these well- (arguably over-) rehearsed debates, we intend to avoid the trap of pouring old wine into new bottles.

It is with this purpose that we introduce recent theoretical and empirical contributions from around the world (namely the UK, US, Australia, Sierra Leone, Malawi, and Guatemala) which depart from static arguments of models and, instead, move towards making sense of how disability is lived, mobilised, and enacted in everyday lives. This involves, for us, foregrounding micro and mundane moments in order to make sense of powerful discourses, practices, and relations. Many critical analyses of disability address key macro concerns, yet are often too far removed from an interactional and micro-level focus. Although the following contributions are broad in focus and navigate diverse social contexts, they are united by their drawing upon qualitative data (e.g. interviews, observations, case studies, life histories) and their valuing of everyday, mundane moments to illuminate the world-making, power relations, and affects at stake for disabled people and their allies. Located within, but also deliberately outside, of disability studies, these contributions thrust disability, as a matter of concern, further into the limelight. Disability studies has frequently operated independently of other fields, including the likes of medical sociology.¹ In this book, we are less concerned with staking a disciplinary allegiance. Instead, our hope is that this volume represents a willingness to explore disability from different vantage points and to acknowledge the telling contribution of other voices.

Theoretically, the chapters in this book are united by a concern with the mundane, everyday interactions and practices of daily life – and what disability is and does in these moments. In this respect, there is a clear affiliation with inter-actionist concerns and, particularly, with the work of Erving Goffman (1963). A central concept here, with respect to Goffman’s corpus, is social stigma. Goffman argues that stigma sets people apart from (normal) others, marking them out as socially inferior and to be avoided, shunned, rejected; ‘a blemished person, ritually polluted, to be avoided, especially in public places’ (1963: 1). He highlights how a person may possess an attribute that ‘makes [him/her] different from others… and of a less desirable kind’, reduced in our minds ‘from a whole and usual person to a tainted, discounted one’ (1963: 5). Here, the person departs from ideas of normalcy, possessing an ‘undesired difference’ from what ‘the normals’ expected (1963: 5).

Goffman’s ideas have formed a substantial component of the lexicon of stigma politics; his concepts have been taken up many times, such as by those writing on disability and courtesy stigma – known as the stigma of association (e.g. Gray 2002; MacRae 1999; Ryan 2008; Thomas 2014). However, his work has also been heavily critiqued, particularly for its lack of engagement (at least explicitly) with issues of power and inequality. Yet Goffman’s contributions align with a crucial concern of this book: how embodied difference is negotiated in everyday lives. Disability can often present a problem in such moments, for example, people may not have the capacity to maintain a personal front in public interactions; ‘nonplussed, out of countenance, embarrassed, experiencing the kind of anomaly that is generated when the minute social system of face-to-face interaction breaks down’ (Goffman 1959: 23–24). Disability, indeed, can involve breaking social rules and norms (Gray 2002) and disturbing the subtle scaffolding of interaction, alluding to ‘competence in social presentation’ with respect to bodily dispositions (Nijhof 1995: 198).

When disabling conditions are visible, or what Goffman (1963: 41) terms ‘discredited’, social situations can be tense, uncertain, and ambiguous for people – and this can be so for invisible conditions too, in that they often involve strategic management during interactional exchanges. Drawing on ethnomethodological sensibilities, we may interpret this as a ‘breach’ in ‘background expectancies’ (Garfinkel 1967: 34–35). For ethnomethodologists, social life entails rule-following to ensure the smooth flow of everyday situations and to reproduce a recognisable and reasonable social order. Such situations are constantly worked at, created by routines and rituals transforming the ‘taken-for-granted’ into ‘natural’ and ‘moral’ facts of life which frame normative conduct (1963: 35). In so doing, people do membership, upholding the social order as a socially managed production. Yet this membership or passing may be disrupted by the presence of something which is unexpected, such as – we argue – a person with a disability; ‘[he/she] who passes will have to be alive to aspects of the social situation which others treat as uncalculated and unattended. What are unthinking routines for normals can become management problems for the discreditable’ (Goffman 1963: 88).

This idea is highlighted by Garland-Thomson (2009: 20) who claims that ‘disability provides us with one of the best opportunities to understand how we stare’. She argues that social interactions between disabled and non-disabled people are ‘tense, awkward, and problematic’, the common result being ocular evasion – a form of ‘civil inattention’ (Goffman 1967: 145). Interactions can be strained; meeting neighbours, attending parties, and introductions, for example, as the zones of first impressions, present possible opportunities for concerns to arise (Davis 1961). Specific empirical examples of this phenomenon have been discussed in relation to autism (Gray 2002; Ryan 2008) and blindness (Måseide and Grøttland 2015; Schillmeier 2007). These contributions identify how people with disabilities and their allies manage public interactions and, on occasion, present a self which is grounded in the normative expectation to repair any possible rupture and disquiet.

Disability thrusts people, then, into a realm of experiments. Here, we may draw upon Mattingly’s (2013: 309) metaphor of the ‘moral laboratory’, that is, a space in which ‘experiments are done in all kinds of places and in which the participants are not objects of study so much as researchers or experimenters of their own lives – subjects and objects’. Such experimentations do not happen separately to everyday life, but are in the midst of the everyday ‘as the expected or the normative becomes subject to experiment’ (2013: 322). These experiments are about being able, for instance, to walk, eat, participate in social gatherings, or be able to share a bed with one’s partner. Such experiments are orchestrated by people with disabilities, along with their families, friends, colleagues, other allies, or sometimes complete strangers.

In these experimental moments, people with disabilities arguably become rooted within what can be called an ethic of care. Care is a relational, intersubjective process that emerges in the spaces between people; people with chronic conditions and their allies negotiate and adjust to their situation, often with the purpose of enabling the production of a good life. Mol et al. (2010) discuss care as a process of putting together different assemblages, leading to the creation of a good, or better, life. Providing care can prompt the transformation of relationships, and the intimacy within, so that new forms of engagement between people, including family members, often result (Warren and Ayton 2015). These engagements are broad-ranging, from helping with toileting and bathing, to wiping faces or helping people to eat, or with mobility and beyond, both at home and in public spaces (Manderson and Warren 2013; Sakellariou 2015a). Carers adapt their understanding of their role – as wife, husband, spouse, son, daughter, friend, or other – to accommodate these activities of care. For Tronto (1993: 102):

Care implies a reaching out to something other than the self: it is neither self-referring nor self-absorbing…. Care implicitly suggests that it will lead to some type of action.

People with disabilities, and the people around them, negotiate what needs to be done in order to produce an outcome that they recognise as good. This aligns with what Jackson (2002: 13) describes as:

An ongoing struggle to negotiate, reconcile, balance, or mediate these antithetical potentialities of being, such as that no one person… ever arrogates agency so completely and permanently to itself that another is reduced to the status of a mere thing.

The anticipated outcomes of these negotiations might appear to be mundane, yet they are crucial in determining how disabled people perceive themselves and how they are recognised by others. The outcomes we refer to here concern the multiple ways people enact their desires and needs, and how they perform the everyday. Here is what we mean by the everyday: the mundane, familiar, and unremarkable stuff of everyday worlds, that is, the routine, repetitive, and rhythmic reproduction of social life, including, but not limited to, attending school, meeting up with friends, seeing the doctor, or going out on a date. Everyday worlds are infused with power and politics; ‘what is mundane and ordinary to one person might be quite extraordinary for another’ (Scott 2009: 2). The contributions in this book, therefore, prioritise the everyday – the micro practices and taken-for-granted social relations that are co-constitutive of the wider complexities and structures of social worlds. For instance, how do people eat, dress, walk, work, interact with others, access resources, and so on? It is our contention that routine, taken-for-granted micro-encounters in the everyday lives of disabled people can produce both hindrances and opportunities.

Focusing on the former, a clear example is the material environment itself (e.g. Boys 2014, 2016), such as absent ramps for people in wheelchairs to access buildings. In this sense, ‘different bodily forms, abilities, and disabilities are not independent of architecture, but are mutually constitutive such that “produced space” also forms “social norms”’ (Galis 2011: 831). Extending this focus on space and place, Serlin (2010) and Molotch (2010: 16) suggest that there is a ‘general hostility to bodily difference, disability included’, and that particular sites become zones of exclusion for some disabled people – toilets being one example of this. A clear design challenge for how disabled people use toilets is the set-up, which must cover the diversity of disabilities and ways through which people navigate that space (e.g. people in wheelchairs, people using crutches or a white stick, or people with invisible disabilities, among others). Providing access means considering how social and physical contexts work, or not, as ‘ensembles of dignity’, affording possibilities for enacted performances (Molotch 2010: 16). Toilets, thus, ‘teach lessons about identity, embodiment, and ab/normal ways of being in the world’ (Slater et al. 2016).

Such ordinary moments of everyday life ‘make up the complex and contingent scenarios of dis/abilities that create enabling and disabling practices’ (Schillmeier 2010: 127). Using the example of how blind people use money, Schillmeier highlights the role of materiality in shaping sociality; money fabricates enabling and disabling spaces of calculation which link bodies, materials, technology, and sensory practices. Likewise, Måseide and Grøttland (2015) put forward that interactions for blind people in public settings indicate the ambiguities of action, morality, and meanings in social space which often do not unfold according to the (moral) principles of the interaction order. One aim of the book, thus, is to make sense of the multiplicity of everyday practices with respect to disablement; ‘how bodies, senses, and things connect or disconnect, enable or disable, provoke good as well as bad experiences’ (Schillmeier 2010: 118). This includes attending to how non-human elements are woven into the social fabric, that is, how materials and space share the scene in order to stabilise a social order (Latimer 2004; Latour 1991). Assemblages of people, things, space and place, and talk combine to produce and order the social, a phenomenon seldom discussed extensively in empirical accounts of disability. The role of space, place, and materiality is captured by a small number of contributions in this collection, particularly Chapter 2 (Buse and Twigg).

Many chapters in this book also unpack the concept of normalcy, or normality (the terms are used interchangeably throughout), within a context of how disabled people go about their everyday lives. For Davis (1995: 2), normalcy and disability are ‘part of the same system’ since disability ‘defines the negative space the [normal] body must not occ...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• List of figures
• List of contributors
• Acknowledgements
• PART I Disability, normalcy, and the everyday
• PART II Youth, normalcy, and disability futures
• PART III Doing care, creating living
• PART IV Global disability politics
• Index