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- Author or Editor: Ann Leahy x
Establishing a critical and interdisciplinary dialogue, this text engages with the typically disparate fields of social gerontology and disability studies. It investigates the subjective experiences of two groups rarely considered together in research – people ageing with long-standing disability and people first experiencing disability with ageing.
This book challenges assumptions about impairment in later life and the residual nature of the ‘fourth age’. It proposes that the experience of ‘disability’ in older age reaches beyond the bodily context and can involve not only a challenge to a sense of value and meaning in life, but also ongoing efforts in response.
This book is about how older people experience physical or sensory disability. Its starting point is a belief that the issue of disability is deeply significant for individuals and societies, and that societies must learn from people who experience disability. The basis for the book is an empirical study with two groups rarely considered together in empirical or theoretical work: people first experiencing disability in older age; and people ageing with long-standing disability.
The book takes a critical approach to gerontology, which characteristically explores questions about meaning, asking how older people make sense of their experience and how tacit or explicit cultural ideals shape that experience (Holstein and Minkler, 2007; Twigg and Martin, 2015). Primarily, the book aims to elucidate experiences of disability in older age. To call the experiences considered here ‘disability’, rather than, say, ‘fourth age’, is already to take up a position (before discussing what exactly is meant by the word ‘disability’), one intended to gesture towards other areas of scholarship. Thus, the book brings disparate areas of scholarship into a critical dialogue, drawing on disability studies, aspects of medical sociology and lifecourse studies, as well as on social gerontology. Disability and ageing are usually approached separately in scholarship. Looking at them together suggests that the subjective experiences of older disabled people are not well understood, with underdeveloped theorising, gaps in empirical evidence and parallel approaches in the fields involved that largely fail to inform each other.
Disability is often understood within models that define it, shape self-identities and determine which professions engage (Smart, 2009). With a view to clarifying concepts at the outset, I discuss in this chapter how disability is understood. The chapter expands on one of the paradoxes identified in Chapter 1: how separate models are used to understand what disability is generally and to understand what it is in older age.
First, I consider understandings within approaches to disability generally – involving two key models: social and biopsychosocial – and then definitions that dominate approaches to ageing, which are largely biomedical. Next, I discuss sociological understandings of disability in older age (principally, the ‘fourth age’), and one alternative approach to disability from the field of environmental gerontology. This chapter is meant as a bridge to the next, which considers theoretical approaches to disability and to ageing. The two chapters interconnect since definitions are fundamental to theorising and scholarship.
It is possible to think of what disability is in terms of three main models. The first are medical models, which attribute disability to the person and tend to approach it at the level of the individual. The second are social models, which are associated with disability studies and activism. They attribute disability to the environment and view disability as socially created and, increasingly, as culturally created. The third are biopsychosocial models, which attempt to bridge the social and the medical, and draw on medical sociology. In these models, disability is understood as relational or interactional – linked to the person–environment relationship.
This chapter expands on the engagement with scholarship started in the previous two chapters. It engages with one of the paradoxes highlighted in Chapter 1: that there are only separate theories on ageing and on disability, impacting on our ability to conceptualise relationships between the two (Murphy et al, 2007). I compare key theoretical perspectives on disability and on ageing, engaging especially with critical or cultural studies, and also consider other areas of scholarship where theorising on disability and ageing could meet. The chapter outlines scholarship that forms a backdrop to, and a rationale for, the empirical study discussed in Part II. It also aims to show how these various fields currently engage, and fail to engage, with the issue of disability in older age, as well as where there may be room for more conversations across them.
I start with social theories of ageing, followed by social theories of disability. I then consider an aspect of the sociology of chronic illness and disabling conditions, and I discuss lifecourse perspectives, before drawing the discussion together. I conclude that critical studies, encompassing a range of perspectives, in both disability and ageing often use similar paradigms to explore ageing and disability but that the two fields largely progress on separate tracks. The review also confirms that gerontologists and some writing within disability studies recognise the need for more exploration of subjective experiences associated with disability in later life.
Public policies frame how societies provide care and support in practice, influence a sense of identity, and shape perceptions of what categories we belong to as individuals. They offer a window on how society conceives of disability for younger and older persons (Kahana and Kahana, 2017: 181). In this chapter, I engage with the separation of public policy frameworks on ageing and disability, and the consequences for older people, focusing on social care.
I first introduce how public policies traditionally underscore difference between people with different timings of disability onset. They can operate as if people are disabled or older, not both. This separately constructs ‘disability’ experienced at different points of the lifespan and makes for an anomalous picture when we consider experiences at the intersections of the two frameworks. The phenomenon of more people ageing with disability highlights the need for connection between the two frameworks. The issues discussed here form part of the rationale for this book’s attempt to open more dialogue between scholarship on ageing and on disability, and form a backdrop to the findings of the empirical study discussed in Part II.
To approach public policies in an international context is to engage with a very broad set of issues. Identifying patterns in long-term care is more difficult than in other policy areas (Esping-Andersen, 1990; Glendinning, 2010), as they are often built on existing institutional arrangements.
I now move to consider the empirical study that informs this book in this and subsequent chapters. This is the first of two chapters in which I address the research question, ‘How do older people experience disability and processes of disablement, and what meanings do they make of those experiences?’ The context for the study is set out in the previous chapters, which also suggest why this was identified as a key research question. Part of the context involves how disability experienced in older age tends to be understood primarily as impairment or as an individual, medicalised issue. Furthermore, there is a need to understand more about how people interpret and negotiate the changes involved.
In this chapter, I first introduce the empirical study and consider some theoretical concepts by way of background. Then, I discuss the study’s findings. The chapter addresses how participants experienced onset of disability, or greater disablement, in their bodies. It shows that this could involve suffering, loss, uncertainty about daily life and the future, and forced abandonment of activities. This could be linked to a sense of finitude and could involve fundamental rethinking about one’s self. This was often so even when disablement (and worsening impairment) occurred gradually and at a stage in life when the participants considered it ‘normal’, ‘natural’ or ‘on time’. This is significant because the normative connection between impairment and older age leads to assumptions that onset of disability in later life might be experienced as anticipated, not disruptive, and that the experience of ageing with disability might be one of continuity, not change.
This is the second chapter addressing the research question, ‘How do older people experience disability and processes of disablement, and what meanings do they make of those experiences?’ It discusses how participants in the present study experienced disability and disablement in interactions with their contexts – social, economic, physical, cultural and political. The chapter starts by returning to the issue of a ‘disability’ identity introduced in Chapter 3 by way of background. I then discuss findings which suggest that participants perceived themselves as more or less disabled due to a range of contextual factors: social/familial factors; support and care; physical environments; and sociocultural meanings in everyday interactions. Participants could be disabled by factors that disable people of all ages, such as inaccessible homes and environments, and through being marginalised or excluded in interactions with others.
Experiencing disability with ageing (DwithA) could be perceived as entering a socially discredited or devalued category – a transition, therefore, experienced not just at a bodily level, but also at a social, cultural and political level. An inverse process meant improvements in aspects of life for some participants ageing with disability (AwithD), even if life was challenging in many ways and often because earlier life had been marked by a sense of exclusion or confinement. The chapter then discusses how participants related to a disability identity and how some people were in the process of negotiating a disability identity in response to perceptions of being discriminated against or excluded, and some were developing a new sense of belonging with other disabled people.
Previous chapters showed how participants lived with ongoing uncertainty, how activities ceased to be possible or accessible, and ways in which they could experience disablism in being excluded from opportunities for engagement or confined to home by environmental barriers. I argued that efforts to cope with disablement processes (both at the level of the body and in broader contexts) amounted to attempts to maintain a sense of value and meaning in life, something constructed in interaction with broader societal discourses of ageing and of able-bodiedness. The focus of this chapter is on responses to the changes involved. I discuss findings relative to the third research question: ‘How do older disabled people respond to the challenges involved in disablement processes?’ As I do throughout this book, I use the term ‘older disabled people’ here to include both participant groups – people ageing with disability (AwithD group) and people first experiencing disability with ageing (DwithA group).
In this chapter, by way of background, I first return to the issue of meaning, raised already in Chapter 3, and address what is understood by ‘meaning in life’. I then discuss how loss of intimates is intertwined with experiences of disablement. In combination, these, I suggest, amount to threats to perceptions of life as meaningful. In the main part of this chapter, I discuss how, in response, participants tried to reinterpret and remake their lives to perceive them as meaningful. They did this by investing everyday activities with new meaning and by continuing to maintain activities, participation and connections, sometimes achieving this with the help of community organising and public responses, including care centres.
In this chapter, I draw on the findings of the empirical study to compare the experiences of the two groups of study participants: the AwithD group and the DwithA group. In previous chapters, arguments made included both groups, sometimes signalling that there were variations in experiences or different emphases in the case of the AwithD group of participants – and it is on those differences that this chapter focuses. This chapter addresses the third research question of the present study: ‘In what ways do the social processes (as opposed to the medical processes) of first experiencing disability with ageing differ from those of ageing with disability?’ I start by briefly considering heterogeneity in the AwithD group and then introduce approaches to comparison between these two experiences. The main part of this chapter uses as subheadings the subjects of each of the three previous chapters – disabling bodies, disabling or enabling contexts, and responding to challenges – and, of necessity, repeats some of the discussion of those chapters.
Both groups could perceive themselves as disabled by their bodies and their contexts. This included loss of intimates, lack of material resources or supportive public services, and inaccessible physical environments. Both groups could be disabled by discrediting attitudes of other people and by overarching framings of disability as a diminished state of being (Campbell, 2001). However, many of those factors had detrimentally shaped life for longer for participants from the AwithD group. The discussion suggests that while differences have often been stressed in scholarship, there are also commonalities between the two experiences.
This book, framed within a critical gerontological perspective, has aimed to contribute to elucidating experiences of disability in older age, drawing on an inductive empirical study. This chapter summarises key issues and empirical findings, and suggests some future directions for scholarship and public policies. At the outset, the book outlined a series of paradoxes inherent in the attempt to engage with the issue of disability and ageing, and, indeed, paradox and inversion were themes that the book engaged with at many points.
Chief among these is the fact that social science approaches to ageing are dominated by issues to do with older age lived without impairment. Despite how anticipated economic costs of health and social care dominate responses to population ageing, relatively little is known about subjective experiences of the people most concerned – older people experiencing disability or chronic illness (or people who might be considered to be in the so-called ‘fourth age’). While there are many studies on impairment in later life, they are often limited to medical or functionalist perspectives. Paradox is also inherent in the fact that older people experiencing impairment are rarely considered ‘disabled’, as well as in siloed approaches to ageing and disability in theorising, activism and policymaking.
Part I contextualised the book and the empirical findings that inform it. Chapter 2 showed that fundamentally different ideas about what disability is inform different fields. This represents a barrier to more conversations that cross existing boundaries in scholarship and in other areas. The chapter suggested that if understood more widely as an explanatory framework for disability in older age, interactional or biopsychosocial approaches to definition could facilitate an understanding of disability as more than a personal problem (discussed again later).