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# Section 6: Impairment, disability and handicap

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### Concepts of health, wellbeing and illness, and the aetiology of illness: Section 6.  Impairment, disability and handicap

This section covers:

1. Definitions and measurement

2. Trends in chronic illness and disability

3. Sociological approaches

4. The social model of disability

1.  Definitions and measurement

The terms impairment, disability and handicap are often used interchangeably, but have distinct meanings that help to describe the physical and social impact on an individual. According to the WHO International Classification of Impairment, Disabilities and Handicap (ICIDH: 1980 – replaced by ICF in 2001), impairment relates to bodily functions, disability to activities, and handicap to social roles. The three are distinct but interrelated.  An impairment is the loss or abnormality of a body function that can be anatomical, physiological or psychological, e.g. a missing limb or diagnosed mental disorder. A disability is an inability or restricted ability to perform an activity within the normal human range, e.g. being unable to walk. A handicap is a disadvantage resulting from impairment or disability that limits the social role of an individual, e.g. being unable to work somewhere due to limited access.

Various tools are used to assess disability and handicap. The Barthel Index of Activities of Daily Living (ADL; Mahoney & Barthel, 1965) is used widely in hospital settings to assess disability, providing a score out of 20 to indicate the individual’s level of independence across 10 domains: bowels, bladder, feeding, grooming, dressing, transfer, toilet use, walking, stairs and bathing. Scoring is based on what a person actually does, as opposed to what they could do; score of 10 will typically require a maximum home care package, whereas scores above 10 will usually require residential care.  The scale has been criticised for focusing exclusively on physical health domains, and failing to take into account the full impact of disability (e.g. in stroke - Duncan et al., 1997).

Handicap is commonly assessed using the London Handicap Scale (Harwood et al., 1994), which is based on the ICIDH framework and measures mobility, physical independence, occupation, social functioning and economic self-sufficiency. There are also tools that relate to specific impairments or conditions, such as the Hearing Handicap Inventory.

2.  Trends in the incidence of chronic illness and disability

The experience of ill-health as chronic illness is very much a feature of the 21st century in Britain, with the following two factors being frequently implicated in this trend:  The massive decline in mortality from infections, and the increasing percentage of the population who are elderly resulting from the increase in life expectancy. However as Bury (1997) has argued, a preoccupation with causes of mortality alone is seen as increasingly ‘problematic in public health circles', given that degenerative chronic disorders such as Parkinson’s disease, MS, arthritis, HIV/AIDS, and many others, have become increasingly prominent and which are all now major sources of disability. It is for this reason that the concern, certainly in public health terms, is as much with the consequences of such long-term illness as with establishing the causes.

Chronic illness and disability now affect more people than ever before, with over a third of the adult population in England self-reporting at least one limiting longstanding illness (see Table 1 and note below for DH definition) – although interestingly, the majority (over three-quarters) defines themselves as having either very good or good health, which relates back to concepts of health and wellbeing and what these mean to different people (see Section 3).

 Table 1 -  Trends in general health, longstanding illness and acute sickness – 2005-2014 Adults age 16 and over - Source : Health Survey for England 2014[1] Self-reported health Survey year 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Men % Very good/good health 76 77 77 76 77 78 77 78 77 77 Very bad/bad health 7 7 6 6 7 7 6 6 7 7 At least one longstanding illness 42 41 42 40 41 40 38 35 38 37 Acute sickness 13 14 13 14 13 14 13 13 12 13 Women % Very good/good health 75 75 74 75 76 75 76 74 76 75 Very bad/bad health 7 7 7 7 7 7 6 7 7 7 At least one longstanding illness 45 44 44 44 43 43 41 41 41 41 Acute sickness 18 18 18 18 17 18 18 18 17 17

 A note on the relation between LLI and disability: As part of the general health questions asked every year since 1996 in the Health Survey for England conducted on behalf of the Department of Health, informants were asked if they had a longstanding illness or disability, and if so, whether any (or all) of these conditions limited their activities. Because the LLI question covers limitations (at any level) on activities of any kind, whereas the disability questions set ability thresholds for a specified set of activities, the prevalence of LLI is higher than that of disability for all ages, except those aged 85 and over, when disability rates become higher. This 'cross-over' effect in disability and limiting illness rates at older ages has been attributed to older people under-reporting limiting longstanding illness because they consider activity limitation a normal consequence of ageing.

Chronic illness, and the disability that frequently accompanies, has been found to be strongly related to social class position. The Marmot review (2010) showed that there is a marked social gradient in disability-free life expectancy at birth, and that limiting illness rates among adults are highest in those with no educational qualifications. This corresponds to a social gradient in lifestyle-related factors such as smoking and excessive drinking, which increase with socioeconomic deprivation. The 2013 Global Burden of disease study also demonstrated a social gradient in disability-adjusted life years (DALYs) for all causes.[2]

People from more disadvantaged social classes are more likely to experience financial, domestic and work-related difficulties as a result of their physical condition. This is because of the direct costs involved in altering the home, special dietary requirements, additional heating costs, the extra cost of using a taxi because of restricted mobility and access to public transport, employing a home help etc. Not only may people with disabilities suffer loss of income through restriction or loss of paid employment, but their partner may have to give up their job to become a full-time lay carer'.  The 2011 census found over that 5.8 million people in England and Wales provided unpaid care, with 775,000 providing 20-49 hours per week and 1.4 million providing 50 or more hours.[3]

3.  Sociological approaches

A sociological approach attempts to look beyond the factors associated with a biomedical understanding of chronic illness which typically focuses on the mechanics of functional limitations and activity restriction. Sociology recognises the need to assess the influence of what Anderson and Bury (1988) call 'the mundane features of daily life dictated by contemporary culture and material conditions' in the experience of chronic illness and disability'.

Until relatively recently sociology had little to say about the specific experience of chronic illness; those social aspects associated with living with an illness were largely subsumed under Parsons’ (1951) conception of the ‘sick role' (see Section 2). Gerhardt (1989) identifies two distinct sociological approaches to the question of the relationship between personal identity and the onset of chronic illness. Firstly, what she calls a crisis model', which is primarily though not exclusively associated with the consequences of labelling and stigma. Here, the onset of a chronic illness is seen to irreversibly change the social status of an individual. Secondly, what she calls the negotiation model', which focuses upon the emergent nature of the chronic illness experience. Living with a chronic illness is seen as representing a potential loss of self, in which the individual struggles to maintain ‘normality' over time, and in the face of the uncertainty associated with such degenerative and debilitating illnesses. Thus, the model emphasises 'adaptation' rather than the adoption of a 'deviant identity' as in the stigma and labelling model.

Michael Bury’s work (1988,1991;1997) has been particularly concerned with how the 'meanings' of our everyday encounters can change drastically with the onset of a chronic illness as specific aspects of the condition make themselves felt over time. The experience of living with a chronic illness and disability is also seen as having the effect of cutting across, "the prescriptive patterns of modern social systems” (1988:90). In other words, societal beliefs and the specific meanings attached to chronic illness and disability strongly influence the societal expectations of what an individual is able to achieve.

Bury goes on to argue that the meaning of an illness for an individual can be seen as operating at two levels:

• in terms of the problems, social costs and consequences of the disability.
• the (symbolic) significance or connotations that particular illnesses carry.

"These aspects of meaning in illness are important to an understanding of the strategies that people employ. In essence, the experience of chronic illness involves testing structures of support and risking meanings within the practical constraints of home and work. Relationships do not guarantee particular responses...meanings change as they are tested and altered as they are put at risk” (Bury:1988:92).

Bury goes on to describe how the experience of chronic illness leads to a loss of confidence in the body, and from this follows a loss of confidence in social interaction or self-identity; a process he terms 'biographical disruption'. This concept bringing into focus the meaning of illness for the individual, as well as the settings in which it occurs. The meanings of chronic illness are not simply personal. They are also the result of shared experiences and interactions with others, which may involve ‘re-negotiating' existing relationships at work and at home. The chronically ill and disabled person also needs to be able to make some sense of their condition before they can begin the process of adjusting' to it. This can involve redefining ideas of what is ‘good' and ‘bad', such that the positive aspects of their lives are emphasised, and the negative impact of the illness lessened.

Rather than focusing on the 'problems' associated with living with a chronic illness, Bury (1991) emphasises the potential for an active coping response to chronic illness utilising Corbin and Strauss's (1991) notion of 'comeback'. This concept has two dimensions: the 'physical' which refers to the active work (as against a passive response) engaged in by the patient when undergoing medical treatment and rehabilitation; and the 'biographical' which is the attempt by the patient to reconnect their life prior to diagnosis with the present and future. Bury employs the term 'coping' in its relativistic sense, that is in terms of different kinds of adaptation rather than the normative use of 'successful' or 'unsuccessful' responses to living with a chronic illness.

The work of Charmaz (2000) focuses on uncertainty' as a defining feature of chronic illness, in its development, progression and treatment. Such ‘bewilderment' begins with the diagnosis of a chronic illness and the subsequent loss of what was previously a ‘taken-for-granted' continuity of life. The diagnosis of chronic illness produces a crisis which, "throws people out of ordinary life, order becomes disorder, the controllable becomes uncontrollable, the understandable becomes unfathomable" (Charmaz:2000: 280). Such uncertainty can also be thought of in relation to three distinct questions or problems arise for many patients following their diagnosis. Firstly, the problem of cause, when people ask themselves the question 'Why me and why now?'. Secondly, with the difficulties associated with maintaining normal social functioning, associated with the question of 'What should I do now?'. Thirdly, uncertainty about prognosis and what the future will offer, this is associated with the question, ‘What will happen to me?'.

Integrating the Biological and the Social in an understanding of
Chronic illness

Over the past few years there has been a debate within medical sociology as to how best to acknowledge the centrality of the body for our sense of self-identity, into an understanding of the social experience of health and illness. Traditionally, sociological approaches played down the physical experience of chronic illness, which reflected the primary concern of the discipline with the interrelationship between social actors (agency) and social structures. Thus, the physical manifestations of illness were seen as the concern of other disciplines, i.e medicine and biology, and the body was primarily conceptualised (as in the case of phenomenology) as a 'social construction'.

Kelly and Field's (1996) work has sought to find ways to explore the nature and status of physical impairments without falling into a simplistic dichotomising of the biological and social. They have attempted to integrate the ‘biological and social facts' associated with the experience of chronic illness through the use of the concepts of self and identity. They adopt the position that social identity and self-conception are central to human social conduct, and that both are crucially related to the body. That 'self' they argue, whilst being clearly different to the body, is nevertheless ‘experienced as one and the same thing'.

The most obvious way in which the physical body influences social life is in the way bodily appearance becomes central to social identity. They go on to argue that whilst the bodily basis of social behaviour and capacities is less obvious once an individual’s social identity has been established, the biological fact of bodies growing old and changing over time does inevitably impact on a person’s social capacities. Kelly and Field conclude that as a chronic illness develops, the management of the associated physical problems has to precede coping with the disruptions to social relationships because they are the `prime focus' of the experience of chronic illness. Because of the body's centrality to an individual’s self-conception and social identity, a chronic illness necessarily involves changes in self-conceptions ‘which are reciprocal to bodily experiences, feelings and actions': ‘Biological facts become social facts because others respond to the person in terms of their physicality. They are also social facts for the individual because the individual sufferer is aware of, and has to take steps to cope with, that physical reality' (Kelly and Field:1996:253).

4.  Social model of disability

According to the social model of disability, people are disabled by societal barriers rather than through impairments (Oliver, 1983). Unlike the indices described above, which focus on individual factors in disability and handicap, the social model considers environmental and cultural barriers to the social inclusion of people with impairments. Environmental barriers include a lack of disabled access to buildings, e.g. no lifts, ramps or accessible toilets, which impose logistical limits on activities. Cultural barriers include perceptions of and attitudes towards people with impairments, e.g. patronising attitudes or assumptions that they will not be able to carry out certain tasks, which can lead to oppression and discrimination. This may contribute to environmental barriers by affecting the implementation of modifications or facilities to mitigate the effects of impairment – for example, the assumption that a person in a wheelchair would not attend certain events may prevent adaptations being made to a venue. The wider socioeconomic context in which we operate is also an important determinant of disability as defined by the social model. It is argued that the capitalist model of Western society perpetuates social disablement through the value placed on production, and how it is organised (Lang, 2001).

Advocates of the social model of disability assert that addressing environmental and cultural barriers to participation should be embedded in planning and policy. The social model has been the basis for the ‘disability movement’ of recent decades, which seeks to secure the rights of disabled people and ensure that they can participate in society as full citizens (see Lang, 2001). This is reflected in the recognition of disability as a protected characteristic by the Equality Act 2010, which places responsibility on employers and others to make reasonable adjustments to account for the effects of impairment. Reasonable adjustments may include changes to physical structures or facilities, e.g. ramp access, or changes to practice (e.g. allowing students with dyslexia extra time for exams). In England, the Office for Disability explicitly adopts the social model in supporting Government departments to consider disabilities in policy development.

This is not to say that the social model is without its limits. It assumes that all disability or handicap is a function of how society responds to impairment, and does not take adequate account of the effects of impairment as an objective state, such as experiences of pain, fatigue and depression (Crow, 1996).  Insisting that all disability can be overcome by addressing structural, cultural and attitudinal barriers within societies may neglect the practical needs of disabled individuals. This was illustrated recently during the 2012 Paralympic Games, which were widely cited as ‘inspirational’ to disabled people and a triumph for social inclusion – however, many disabled people felt that this placed unrealistic expectations on them and diminished their experiences of the physical realities of impairment, which were not necessarily the same as those of Paralympian athletes.[4]

© I Crinson 2007, Lina Martino 2017