Disability and physical activity in late life—research models and approaches

Prevention of disability in late life has become a major public health concern, a key area of ageing research, and also an important target for the development of effective interventions. The increase in life expectancy and the resulting growth of the elderly population are also thought to be driving up the number of elderly people with disabilities. Despite the message that regular moderate physical activity has substantial health benefits even in very old age, older people remain largely sedentary. The most popular theoretical model for researching the development of disability is the disablement process, which is widely used, in the gerontological literature. The main pathway according to this model leads from diseases and injuries to impairments, functional limitations, and disability. This approach has been challenged most particularly by models, which emphasize the social construction and determinants of disability. Numerous physical exercise interventions have aimed at preventing impairments, functional limitations and disability, and at promoting independent living in late life. A review of the results of these interventions shows that exercise can indeed be effective in preventing impairments and functional limitations, but the evidence regarding the prevention of disability and dependency is inconclusive. The inconsistency of the results is related to differences in research models and approaches, cultural and other differences between the populations studied, and variability in research designs and methods, including definitions of key variables. In the future, research-addressing disability in late life needs to focus on the dynamic interactions between individuals and their social, physical, and cultural environment. Furthermore, randomized trials that are larger and longer than most existing studies of physical activity need to be conducted. Additional evidence can also be obtained by well-conducted observational studies focusing on the prevention of progressive disability related to chronic conditions. One of the key areas of development is in improving the definition of both independent (physical activity and exercise) and outcome (functional limitations, disability) variables. A further challenge is presented by the investigation of dose–response relationships, including both beneficial and possible adverse effects of exercise.     

Disabled People,Health Professionals and the Social Model of Disability: Can there be a research relationship?

The social model of disability is proposed as an alternative to models that have viewed disability as an individual, rather than a socio-political issue. The use of this model to guide both research theory and practice is proposed in order to equalise research power relationships, and involve and empower disabled people. Health professionals have traditionally reinforced the medical model of disability in both research and practice, and this has been seen as contributing to the oppression and marginalisation of disabled people. If the social model is to achieve wider dissemination, it would appear important to develop a dialogue between disabled people and health professionals. However, because of negative perceptions it can be difficult for health professionals to find an appropriate position in relation to disabled people, research and the social model of disability. While not denying the past, it appears essential to look at ways in which disabled people and health professionals can work together to overcome the oppression and marginalisation that has been linked to the provision of health services.     

My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries

This paper aims to describe research that examined the views of people with physical disability, living in Australia, of their sexual well-being needs from their own perspective. We explored the impact their sexual well-being needs had on their relationships with professional carers. A social model of disability was used to understand how sexual well-being is facilitated or denied in community care. We also explored whether clients' sexual well-being needs could be met without carers or clients 'crossing the line'. Our findings indicate the multiple ways that 'professional boundaries' were negotiated between clients and professional carers. The data show that the location of the 'line' changed, depending on a range of personal, social, economic and environmental factors. The data also show a gap between the sexual well-being needs of people living with a physical disability and the level of support provided at the social and organisational levels. Suggestions are made for research and practice directions.     

Disabled men and fathering: opportunities and constraints

Over the last decade in the UK and elsewhere, fathers have become a visible presence in research and social welfare policy and practice agendas. While there is an increasing awareness of the heterogeneity of fathering contexts and experiences, disability as a dimension of difference among fathers has received little attention. This is so across all relevant bodies of research, including those on fathering, masculinities, disability, and parenting. In this paper, we seek to contribute to filling this gap by exploring the experiences of disabled men in relation to their fathering experiences. We draw on the findings from two qualitative research projects conducted in the UK, one on the experiences of disabled parents (mothers and fathers), the other on the experiences of disabled fathers. The findings suggest that the experience of impairment and disability positions men in relation to fathering in ways which can be both constraining of their fathering practices, as well as opportunistic in terms of re-articulating more ‘traditional’ fathering identities and practices. We suggest that while disability intersects with other important social divisions, there is a need for further research focused on the shared experiences of disabled fathers, particularly to inform family and child welfare policy and practice agendas.     

Seeing the Invisible Children and Young People Affected by Disability

This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.     

Global sport mega‐events and the politics of mobility: the case of the London 2012 Olympics

This paper examines the politics of mobility which surrounded the London 2012 Olympics. We provide a critical discussion of the mobility conflicts, problems and criticisms which emerged from our research with local people in the Stratford and wider Newham areas of London, where most Olympic events were located. The paper is divided into four broad parts. First, we identify and discuss the relevant components of the ‘mobilities paradigm’ in social science which underpin our analysis. Second, we briefly outline our research methods, centring particularly on fieldwork and interviews with different social groups. Third, we examine in detail the six main themes of mobility politics which were evident at London 2012, relating to social context, event construction, event mobility systems, commercial mobilities, the mobile politics of exclusion, and contested modes of mobility. In doing so, we seek to extend the mobilities paradigm by introducing various concepts and keywords – notably on the three‐speed city, entryability, mobility panics, instrumental mobility, and corporate kettling – which may be utilized by social scientists to examine mobility systems in other social contexts. We conclude by reaffirming the significance of mobility‐focused research at sport and other mega‐events, and by indicating future lines of inquiry for social scientists.     

The Use and Abuse of Models of Disability

Throughout history, theorists have made use of the technology of the day to provide explanatory models of the behaviour they observe in order to provide an improved understanding of human behaviour. Bax (1998) describes the use of models of disability as not particularly helpful in relation to the treatment of children with physical disabilities. It is the purpose of this paper to show that models do have their place within disability research and the implications of using the medical and social models of disability, together with two models from developmental psychology, namely the transactional model and systems theory, will be discussed. It is argued by the authors that the usage of these models can aid understanding of disability in both research and clinical settings.     

Normalisation, Emancipatory Research and Inclusive Research in Learning Disability

In this article I set out to trace the influence of two major sets of ideas: normalisation/srv, and the social model of disability on inclusive research in learning disability. The argument is that normalisation set the agenda for learning disability research for two or more decades. Inclusive researchers continue to apply normalisation thinking to work with people with learning difficulties, particularly in assuming the role of advocate - offering people the opportunity to take on valued social roles and assuming responsibility for promoting positive images. Latterly, a number of researchers have tried to rise to the challenges posed by emancipatory research, particularly in attempting to find ways to put people with learning difficulties in control. This illustrates the influence of thinking emanating from disability studies. However, the paper shows that whilst some ideas from emancipatory research have been applied in learning disability, there are debates in the disability literature that have not been addressed in learning disability research to date. The result is that inclusive research in learning disability is in danger of being marginalised, both in the context of disability studies and in the context of the broad sweep of learning disability research.     

Accounting for Disability: Customer feedback or citizen complaints?

This paper has two aims. First, it will summarise the findings of a study of the views and experiences of adults with acquired physical impairments. This entailed taking open-ended accounts from respondents in order to elicit their concerns and experiences. The paper will focus on two aspects of data from the study: views about health and social services; and those about citizenship. The second aim of the paper is to situate the role and status of personal accounts of disability within the health and social policy context of recent years, which has been characterised by both consumerism and an intensification in the activities of the disability movement. In the run up to the 1990 NHS and Community Care Act, it became clear that the purchasers (now 'commissioners') of health and social services would be encouraged to elicit users' views of services, to engender a needs-led not provider-led approach. Later in the paper we will discuss the relationship between this officially endorsed consumerism and the concerns of disabled people when voicing their views. It will be argued that personal accounts of disability have gained a cultural currency because of the convergence of processes linked to consumerism within recent British health and social policy on one side and new social movements on the other.     

Counselling Disabled People: a counsellor's perspective

For many years professionals have assumed that disability is a problem for impaired individuals and that it is the disability that causes emotional or psychological problems. Whether this is true and whether a specific model of counselling is needed to help disabled people to cope with the emotional effects of their disability has not been widely researched and this is examined in this piece of research. The causes of psychological distress are discussed and the ways in which counsellors work are studied. Using a grounded methodological approach, disabled and able bodied counsellors of disabled people were interviewed as this was considered to be the most sensitive way of exploring this area. The findings show that more often than not it is the client's lack of control over their physical and social environment and not the impairment that causes emotional difficulties. Counsellors indicated that, through the facilitation of counselling, a sense of self empowerment in practical, emotional and social areas could be achieved and this was the central theme emerging as the most distinctive aspect of counselling clients with physical impairments.     

'Tell me in your own words': disabling barriers and social exclusion in young persons

This article summarizes two research studies carried out in the University of Cantabria and the University of Sevilla with young persons at risk of social exclusion (underprivileged socio-economic groups, ethnic/cultural minorities and disabled people). We uphold the need to study exclusion as a socially constructed process, which allows us to discuss barriers to social participation (following the social model of disability) while ruling out the essentialist and psychological explanations of inequality and social oppression. We aim to know the barriers young persons have encountered in social and school participation through their own words. We have used several biographical/narrative techniques which have an emancipating interest. Such techniques allow us to learn from the discourses of the young women or men that participated in the research and to discover the fundamental milestones that have shaped their excluded identities.     

Researching Disability Politics, Or, Some Problems with the Social Model in Practice

This article arises from a research project involving the disabled members' group in UNISON, and problematises the social model which explicitly undergirds the discourses and practices of this group. In abstract terms, there are dangers that the social model can be interpreted in a way which privileges some impaired identities over others, sanctions a separatist ghetto which cannot reach out to other groups of disabled and disadvantaged people, and weaves a tangled web around researchers who adhere to the emancipatory paradigm. In concrete terms, these dangers are explored with reference to the stories of impaired people who believe that they are excluded from the disabled members' group, the predicaments of ex-disabled and differently-disabled people in relation to the movement, and the culture of suspicion surrounding academics, particularly the 'non-disabled' researcher as would-be ally. It is argued that, whilst such identities and issues might appear to be 'marginal' ones in the sense of occurring at the boundary of disabled communities, disability politics and disability studies, they should not be 'marginalised' by disabled activists and academics, and indeed that they pose challenges to our collective identities, social movements, theoretical models and research paradigms which need to be addressed.     

Disability and disaster recovery: a tale of two cities?

This paper examines the connections between disability and disaster from a global perspective. Concepts from the research and policy literature are used to distinguish between individual and social models of disability, and between natural hazards and human disasters. These concepts are then employed to investigate data on the response to disabled people's recovery needs in two recent case studies: the Asian tsunami and Hurricane Katrina. The analysis combines primary, secondary and tertiary sources to explore disability issues in the reconstruction of inclusive communities and the lessons that may be learned about disaster preparedness in poor communities. The conclusions suggest that more attention should be paid to social model approaches, particularly in understanding global links with poverty, and that disabled people's organisations should be resourced as agents of disaster recovery and preparedness.     

The continuum of dependent family care: a theoretical explanation and model

ABSTRACT

Caring for dependents with disabilities and how this type of care differs from the care of typically developing dependents has largely remained unaddressed in the work–family literature, partly because of a lack of theoretical development on the concept of dependent family care. Studies examining dependent family care often apply a life course perspective, missing key disability factors influencing dependent family care demands and need for resources. This article develops a theoretical framework of dependent family care that accounts for both typical care, which follows the life course trajectory, and exceptional care, which follows a disability trajectory. We position dependent family care as based on a continuum, achieved by adapting life course theory, family adjustment to chronic illness, ecological systems theory, stigma theory and the social model of disability into a model. We explain how dependent family care occurs and what contributes to whether one is engaging in typical or exceptional care. We draw broad constructs representing predictors of different types of dependent family care. We provide specific examples to illustrate how one might test theoretical propositions, an agenda for further research and discuss implications for family–work–community research and practice.     

The sexual side of physical disability

This article describes the format and evaluation of a study day on the sexual side of physical disability. Many staff, such as social workers, occupational therapists, doctors and nurses, who work with disabled people, feel that there is a need to discuss with them how their disability may affect sexual and emotional relationships and what can be done to overcome any problems which might arise. They are, however, reluctant to raise the subject of sexuality, first because they have insufficient information, so have no positive suggestions to offer, and second because of feelings of embarrassment and other, perhaps unexplored, feelings about sexuality and disability. The study day was designed to help social workers and other staff to feel comfortable enough to raise this important topic with their clients.     

The Social Model of Disability: What does it mean for practice in services for people with learning difficulties?

Does the social model of disability currently inform the delivery of services for people labelled as having profound and complex learning difficulties? What distinguishes practice which draws on the social model from that which is influenced by an individual model or a medical model of disability? This paper draws on the findings of a small scale interpretive research study and some of the current debates within disability studies to illuminate these questions. It concludes that the social model can and does positively impact on some practice and that it should be taught to all providers of services for this group. It further concludes that to include discussion about individual experience of impairment in such training may have negative consequences.     

Disabled people,inclusion and policy: better outcomes through a public health approach?

The social model of disability has implications for evaluation of disability policy. Public health analyses suggest that a population and environmental approach to enablement is more likely to impact positively on disabled people than person-centred action. The capacity of people living with disabilities to participate in a range of social activities and the attitudes of others to such participation are, along with environments, important factors contributing to disability situations and therefore the restriction of our promotion of personhood. These are areas where metrics could be used to evaluate the impact of disability policy.     

Disability and Disaster Recovery

Abstract

This paper examines the connections between disability and disaster from a global perspective. Concepts from the research and policy literature are used to distinguish between individual and social models of disability, and between natural hazards and human disasters. These concepts are then employed to investigate data on the response to disabled people's recovery needs in two recent case studies: the Asian tsunami and Hurricane Katrina. The analysis combines primary, secondary and tertiary sources to explore disability issues in the reconstruction of inclusive communities and the lessons that may be learned about disaster preparedness in poor communities. The conclusions suggest that more attention should be paid to social model approaches, particularly in understanding global links with poverty, and that disabled people's organisations should be resourced as agents of disaster recovery and preparedness.     

Why do working relationships not change? The need for a new approach to disability partnership research and social change

Although researchers, service providers, and clients are determined to improve partnerships within disability services, a lack of partnership persists. Using our research as a case study, we reflect on three limitations of common research methods and social change techniques in this area. We suggest that typical approaches struggle to move beyond taken-for-granted ideas, common-sense solutions, and established ideology in the field of disability. Consequently, they often fail to reveal important barriers to collaboration, identify innovative solutions, or initiate meaningful improvements in partnership. We propose a new approach to partnership research and reform grounded in a pragmatic model of social change and argue that projects based on isolated or simplistic data, majority-rule decision-making, simple and efficient planning, and restricted inside perspectives (where storytelling is limited) must be complemented by observational studies, socio-cultural analyses, and critical investigations. In short, we must understand why working relationships do not change to improve disability services.     

Social justice: redistribution and recognition—a non-reductionist perspective on disability

The purpose of this article is to present some recent contributions to discussions on social justice and recognition in the context of disability research. Nancy Fraser's theory of redistribution and recognition, and her endeavour to include both a materialist and a cultural perspective in a theory of justice is examined. We also discuss Honneth's Hegelian-informed model of recognition. Critical realism, emphasizing a non-reductionist perspective, is briefly presented and, finally, we put forward some ideas on how to analyse and understand disability within such a framework.