Does it matter what we call it?

Models of disability

Models of disability are often represented as opposing medical and social models. The medical model regards disability as a problem which is intrinsic to the person and caused directly by disease, a health condition or trauma. Here, ‘impairment’ is not only used to describe disturbance in the body’s structure and function. It is also seen as responsible for preventing the individual’s participation in normal society and, therefore, disabling them. This means that management of disability is diagnosis-related and cure-oriented, led by professionals, and aims either to improve the individual’s functional ability to engage in society according to its norms or to make separate (segregated) provision for them. Conversely, the social model is based on the assumption that disability exists where attitudinal or environmental barriers exclude people with impairments from full engagement in mainstream activities. This defines it as a socially created problem which is distinct from and superimposed on impairment. From this standpoint disability can be managed collectively by social action. This seeks to remove and change barriers, whether present though society’s intent or omission, and to support individuals in dealing with them (WHO 2001).

There is a danger of seeing the above models as absolutes, for example in judging services simplistically as either focusing on medical intervention or not. The social model arose from the British disability movement and, in characterising disabled people as an oppressed group, has been central to its civil rights agenda. As Shakespeare & Watson (2002) comment, however: ‘Most activists concede that behind closed doors they talk about aches and pains and urinary tract infections, even while they deny any relevance of the body while they are out campaigning’.

While the medical model might be criticised for defining people by their impairments and medicalising their lives, the social model arguably downplays the impact impairment has on daily personal experience and that most impairments have some medical implications.

The WHO’s (2001) International Classification of Functioning, Disability and Health (ICF) was developed with the intent of synthesising the above models via a bio-psychosocial approach. Its aims included establishing a common language to improve communication between service stakeholders and a framework that would allow international comparison. In so doing, it provides a conceptual basis for defining, measuring and formulating policy for health and disability. Using this gives nurses the potential to understand disability’s social, political and cultural dimensions and provides a platform for working collaboratively with disabled people and other health professionals (Kearney & Pryor 2004).

The ICF (WHO 2001) comprises two parts, each being made up of two components. Part One is concerned with functioning and disability, encompassing body structures and functions, activities and participation; Part Two addresses contextual environmental and personal factors. As shown (Figure 32.1), these elements have an interactive and dynamic relationship.

Figure 32.1 Interactions between the components of the international classification of functioning, disability and health.

(Adapted from WHO 2001, with permission.)

This work supersedes the International Classification of Impairments, Disability and Handicaps (ICIDH) (WHO 1980). The term ‘handicap’ was then used to describe comparative disadvantage and role loss but is now perceived as pejorative and generally avoided. In North America, however, the term is used in the same way as ‘disabled’ is in Britain (e.g. designation of handicap parking spaces).

Disabled people are divided over the use of other collective descriptors of themselves. For example, some choose to use the term ‘crip’, reclaiming the term ‘cripple’ in their identity, whereas others feel it offensive. Importantly, being referred to in this way by non-disabled people and without permission is regarded as offensive. Similarly, some disabled people draw distinctions between themselves and those without disability by referring to them as ‘AB/AM’ (able-bodied/able-minded) or ‘normie’ (Box 32.1).

Box 32.1 Reflection

The impact of language used to describe disability (see also website)

If you are able-bodied or able-minded, how do you feel about being described as an ‘abled’ or ‘normie’? Think about how this makes you feel about terms you have used to describe disabled people.

Lifestyle and blame

Clear associations can be made between aspects of lifestyle and some long-term conditions; for example, smoking is linked with lung cancer, and a diet high in saturated fats with coronary heart disease. Awareness of such relationships might result in individuals being judged to have caused their own disease and suffering. There is also an implication that they have failed to respond to preventive health education campaigns. Attribution of blame has a strong moral influence where links can be alleged between diseases and sexual behaviour, such as that between HIV/AIDS and promiscuity. Beliefs concerning the origin of long-term conditions and disability appear, therefore, to reflect a combination of moral ideology and scientific principles (Box 32.2).

Disability and unemployment

Economic survival in pre-industrial society largely depends on the capacity to engage in physical labour. Individuals restricted by the effects of protracted disease or impairment would thus have a limited function in their social group. This, together with likely dependency on others, could result in the perception that disabled people are of less value than their able-bodied counterparts.

In an industrialised society, however, technological developments and diversification of working practices should create opportunities for those with a wide range of disabilities to gain employment. Nonetheless, disabled people encounter discrimination. One in five people of working age can be defined as disabled, yet 52.6% of disabled people are unemployed and they are three times more likely to be economically inactive than other groups. UK legislation has not fully addressed this because the Disability Discrimination Act (DDA) 1995 and its subsequent amendment (2005) are subject to interpretation while the impact of the Equality Act (2010) remains to be seen. For example, this now prevents employers asking about an applicant’s health before offering them work but does allow them to ask questions regarding assessment and need for reasonable adjustment. Also the onus is on individuals to demonstrate that they are disabled under the terms of the Act and assert their rights. Decline in employment rates for disabled people since introduction of the Act could be due to employers’ lack of awareness and perceived added costs of recruiting or retaining disabled staff (Bambra & Pope 2007). Thus applicants for posts that match their skills and experience might still not be short-listed, with reasons other than disability used to explain why their profile is not considered appropriate. Some issues around employment will be explored later in this chapter.

Stigma

According to Goffman’s (1963) seminal text, the word ‘stigma’ was originally used with reference to visible signs inflicted to brand individuals (including slaves or criminals) unfit for participation in normal social interaction. These signs had moral and judgemental implications, such that the disgrace and shame of the stigma assumed more importance than its physical presence. The stigma attached to a long-term condition relates to deviation from the perceived norm and depends on the body part involved, visibility, controlability and diagnostic labelling. Dependency can also be stigmatising. Reliance on services, state benefits or other people means that individuals with long-term conditions are in a position of receiving without being able to contribute in return. To be labelled with a long-term condition is to be deemed exceptional and, in many cases, marginalised. People in this situation engage in constant efforts to make themselves acceptable and their stigmatising condition often dominates their social identity and relations with others (Box 32.3).

People with less visible conditions such as epilepsy experience ‘felt stigma’ which increases the stress of managing their condition (Jacoby et al 2005). The problem of constantly concealing part of oneself in order to pass as normal and avoid being found out is added to by difficulties in gauging which details to share with whom, so that relationships can be maintained. Relatives also experience stigma by association and this affects their relationship with the individual and wider society. Cultural and ethnic dimensions also have relevance here, as illustrated by Chadha’s (2003) experience of living with multiple sclerosis (MS). Because this is seen by the UK’s Asian community as a disorder more likely to be found in the indigenous white population, it left him isolated, misunderstood and ‘made to feel that my immediate family and I were responsible’.

Others’ behaviour towards people with long-term illness reinforces stigma when they generalise or make assumptions about impairments. For example, they might treat a wheelchair user as if incapable of reasoning, speak loudly to someone with visual impairment or communicate with others accompanying a disabled person rather than to the individual directly. This ‘does he take sugar?’ approach leaves people feeling less than adult. For example, C, an office administrator with cerebral palsy, described the public humiliation felt when waiting with a friend at a crowded supermarket checkout. The sales assistant confirmed the purchase with the friend before reluctantly taking C’s money and then made a point of handing the friend the bagged items, change and receipt.

Health care workers share society’s view of disability. Reflecting this in their interactions with disabled people can compromise effective care (Seccombe 2007). Perceiving disabled people to be dependent or to be pitied gives rise to an approach which gives them a sense of being patronised, demeaned and disempowered, adds to their feelings of inferiority and reduces confidence in the caregiver. Nurses working with people who have long-term conditions will naturally experience a range of emotions when confronted with very real manifestations of human vulnerability. Distancing might provide short-term protection in shielding these emotions but accentuates the space between nurses and stigmatised people.

Public awareness campaigns

Groups have been established to raise awareness of long-term conditions. The amount of popular support they receive depends on how society views the circumstances to which they are related, that is, whether people are likely to have direct experience of a disorder or, in the case of war veterans, if they are associated with controversial campaigns.

Some groups draw attention to specific conditions and their effects. Independent from formal agencies, these organisations function as a resource for people with long-term conditions, their families and professionals, lobby to influence policy, and raise funds for facilities and research. Groups operating without the active participation of affected individuals risk addressing assumed, as opposed to actual, need. In addition, disability activists assert that fundraising events reinforce the notion that an automatic relationship exists between disability and handouts. Members of these groups advocate the principle of ‘nothing about us without us’ and believe that disabled people should avoid passivity and the socialised dependency that results. Their practice of self-advocacy, use of direct action and insistence upon parity rather than charity contrasts sharply with the conventional image of ‘the disabled’ as recipients of care.

See website Critical thinking question 32.1

Consequences of changing morbidity and mortality

Improvements in public health have almost eradicated some infectious diseases, while others have been largely controlled by vaccination programmes. In addition, infectious diseases are generally amenable to treatment and therefore long-term rather than infectious disease remains the major cause of death and disability (Health Protection Agency [HPA] 2005). However, it must neither be assumed that infection has been eliminated from Western societies nor that long-term conditions cannot be infectious; AIDS is the result of infectious disease, yet to contract it means living with a long-term condition.

Continuing decline in mortality from infectious disease is reflected in an increased expectation of life for all age groups, a trend liable to continue. This has implications for the number of people experiencing long-term conditions and disabilities because the prevalence of these rises with advancing age. Confirmation of this can be found in data from sources such as the UK Census, General Household Survey (GHS) (latterly known as the General LiFestyle Survey or GLF) and Labour Force Survey, all of which use variants of the most widely used method of assessing activity limitation – the self-reported limiting long-term illness (LLTI) or disability question (ONS 2004, 2006). This generally involves asking respondents whether they have any long-standing illness, health problem or disability and whether this limits their activities in any way.

The national picture

In the 2001 Census, an LLTI or disability was reported by 10.86 million people, representing 18.47% of the UK population. Of these, 10.3 million lived in private households and the remainder in communal settings. Rates of LLTI or disability increased steadily with age, though gender differences were relatively small until the age of 60. Just over 10% of males and females aged between 35 and 39 years reported an LLTI, while in the 60–74 age group, 41% of males and 38% of females fell into this category. Rates among those aged over 90 were 69% and 78% respectively. Geographical comparison across the UK shows that England has the lowest rates, with Wales and Northern Ireland having the highest (www.statistics.gov.uk/census).

Census data reveal other social inequalities. Of working people, those connected with routinised occupations were most likely to report LLTIs but prevalence was greatest among economically inactive respondents. Among ethnic groups, Asians have the highest rate of LLTIs at 20%. Rates in those identified as Mixed or Black are both higher than found in the White population, while people of Chinese and other backgrounds have the lowest rate overall.

Census questions have not concerned types of long-term conditions and disabilities experienced or how these limit activities. Although the GHS samples only private households, it asks about the nature of health problems, coding replies according to the International Classification of Disease. Data from the 2002 survey show the prevalence of long-standing illness in children and adults to have risen from 21% to 35% between 1972 and 2002, while LLTIs have increased from 15% to 21% (www.statistics.gov.uk/ghs).

Adults reporting a long-standing illness most frequently identified musculoskeletal, circulatory, respiratory, endocrine, digestive and nervous system disorders. With the exception of skin disorders, prevalence of all conditions rose with advancing age. For example, 7.6% of 16–44-year-olds had a musculoskeletal disorder, compared with 36.3% of those aged 75 and over. The number of conditions identified per person increased similarly, being 1.3 for those aged 16–44 years and 1.8 for those aged 75 years and above. Musculoskeletal, circulatory and respiratory disorders were also the most common limiting conditions, affecting respectively 34%, 19% and 10.5% of respondents with LLTIs.

There is striking similarity between the proportions of men and women experiencing various long-standing conditions, with the following two exceptions among those aged 75 years and over. First, 27% of men stated they had a long-standing musculoskeletal disorder, compared with 42% of their female counterparts. This could be partly due to women’s longevity. Secondly, 11% of males identified themselves as suffering from respiratory disease, whereas only 7% of women characterised themselves in the same way. Differences in lifetime smoking behaviour are reflected here, although occupational factors could also be significant (Box 32.4).

The 2002–3 Family Resources Survey (www.statistics.gov.uk/surveys) asked respondents with LLTIs to identify their limitations or disability from eight categories offered. Mobility was most commonly named by over 60%, a similar percentage had difficulty with lifting, carrying or moving objects, and 25% experienced this with manual dexterity. Problems with memory, concentration and learning, continence and communication were less prevalent.

The findings of these surveys support the notion that, while long-term conditions are widespread, only a proportion of those affected might be significantly impaired or disabled. It is, however, important to recognise that the results need to be interpreted in the light of improved diagnostics and treatment leading to an increased number of people being diagnosed and living with long-term conditions than previously. Data are also based on respondents’ own assessments; people might not define their illnesses as long-term and older people are liable to under-report limitations because they perceive these to be normal features of ageing.

The impact of fluctuation

Fluctuations in symptoms, and energy to manage them, make it impossible to forecast the occurrence of ‘good days’ and ‘bad days’ and this is compounded because a ‘good day’ can turn abruptly into a ‘bad day’ and vice versa. Uncertainty is also present because many long-term conditions are episodic, involving recurrent unpredictable exacerbations, followed by periods of remission or control. Since the onset and duration of exacerbations cannot be anticipated, individuals and their carers must be vigilant for them and ready to respond at any time. This means that individuals and their families can find it difficult to maintain continuity or plan their activities ahead and, as a result, cannot participate fully in community life. Friends might, for instance, eventually hesitate to extend invitations when people have repeatedly refused or withdrawn from events. Regret, resentment and social isolation can follow as activities are curtailed (Biordi & Nicolson 2009).

Fluctuation in long-term conditions also influences the way in which individuals perceive themselves and are perceived by others. Crucially, the invisibility of some conditions can cause others to question the reality of their experience and even doubt that it exists. For example, when people comment ‘but you look so good for someone who has MS…if they can’t see it, there really isn’t anything wrong with me’ (National Multiple Sclerosis Society 2007), the subtext is ‘You can’t be sick, you’re just faking it’ (Anon 2007). This means that the consequences of living with a long-term condition are disregarded. Individuals are believed to be directly affected only when it becomes noticeable, so variation in ability, during a particular day or period of exacerbation, is misunderstood. Nurses lacking knowledge of long-term conditions can be quick to make judgements as to why people could perform activities yesterday but not today or cannot be certain of their capability for tomorrow. This can have harmful consequences. For instance, staff caused an immobile man with Parkinson’s disease considerable distress when they implied he was lazy because they had seen him walking previously. He was actually unable to move due to the unpredictable ‘on-off effect’ associated with his response to long-term medication.

Beneficial effects of uncertainty

Paradoxically, uncertainty in long-term conditions can be perceived positively as an opportunity to reappraise life’s possibilities (Bailey et al 2007). Whether of sudden life-changing onset or signalling that changes will occur, diagnosis can prompt individuals to reflect on the way life had been lived and to search for new meaning in exploring events, reprioritising and seeking new challenges. As one person explained: ‘If anyone asks, I tell them I wouldn’t do away with having had my stroke now. Yes, I’d do away with its problems but I’ve learned who my real friends are, that I don’t want to spend all my waking hours in the office and discovered I can do things I’d never thought of as “me” before too – like disability sport and joining a service users’ group’. Uncertainty can also motivate concordance with treatment, since this provides a tool for maintaining some stability.

Loss, grief and adaptation

Grief experienced in long-term conditions resembles that in bereavement. It can be associated with loss of a body part, image, function, social status or role and can occur suddenly when a long-term condition is acquired or over time as it progresses. People can also experience loss of identity because it reflects their previous, non-impaired self and they feel they have become less of a person than they were. Awareness of models of grief or response towards threat to self-integrity (e.g. Kubler-Ross 1969 and Morse 1997 respectively) guides nurses in supporting individuals to work towards adaptation to unwanted change. However, care must be taken not to apply these prescriptively because personal reactions differ. Falvo (2008) identifies a general path beginning with shock, numbness and disbelief, when the diagnosis or the severity of the condition is denied. This is followed by acknowledgement of the situation’s reality, when grief intensifies. Continued exposure to the loss can lead individuals to adjust and come to emotional acceptance but this is not guaranteed. The process is painful, unpredictable and fluctuates in their struggle to manage the powerful reactions created, as shown in Rushby-Smith’s (2008, p. 210) thoughts on life after spinal cord injury. ‘For most of the day I’m in pain. I get frustrated that I can’t reach things, climb things, negotiate stairs, step over things, bounce my daughter on my knee […] At the end of every day I am filled with a mixture of rage and utter debilitating terror, as I struggle to accept that this is me this is happening to, and that I will never get back my life as I knew it.’

For some, grief remains unresolved and can be more disabling than the condition itself. Here, it is essential for nurses to recognise the meaning of what has been lost and understand that addressing this is key to renewing self-identity (Telford et al 2006). Again, this means considering bio-psychosocial issues beyond diagnostic labels and accounting for other health problems present. For example, following traumatic injury, a researcher adjusted to physical impairment with relative ease but had difficulty in accepting the continuing impact of a stress-related anxiety disorder. He felt profoundly diminished by the realisation that his hard-worked-for career would not progress as planned, having to regard as a real achievement the completion of workplace activities he previously undertook without thinking and depending on his partner for reminders about household tasks. This was compounded by a nurse saying he was fortunate: ‘but my ability to rely on my mental sharpness and function under pressure is important – it’s who I am. I just can’t get past that. I feel like a champion runner who battles daily to stumble round the block and is expected to be grateful for it’.

It can be seen from this that adaptation is complicated, particularly because ‘good’ adaptation is judged by others. The emotional burden involved can be increased by shame and guilt at failing to recover or adjust as quickly as expected. Health workers need to bear this in mind if attempting to encourage individuals by comparing them with others who have adapted successfully despite being ‘worse off’, for instance having shorter life expectancy or being socio-economically disadvantaged. Creating artificial hierarchies of suffering and invalidating someone’s experience are unhelpful. Although it is not truly possible to walk in another’s shoes, trying to understand the person’s own perspective is paramount. Individuals can feel responsible for not doing better, in the light of images of disabled people as ‘brave’ with an innate capacity to tolerate adversity, or assumptions that they must simply adjust to the obvious. Pressure can be added where media portrayals of triumph over tragedy create models of behaviour which individuals feel they must live up to. As someone with lymphatic cancer recalled: ‘Everything and everyone, everywhere, tells you to think positively. So, when a tumour came back I thought it was my fault. I hadn’t thought positively enough’.

Others can also compound feelings of difference. Disabled people are commonly treated as if public property, being subjected to staring and unsolicited comments. This can be shocking when acquiring a long-term condition. For example, one person described her eagerly awaited first post-stroke holiday being ruined when passers-by overtook her moving slowly up a station stairway and observed loudly ‘People like that shouldn’t be allowed out’. Questions such as ‘What’s wrong with you?’ and ‘Why are you using that stick?’ are invasions of privacy, yet strangers and acquaintances feel justified in posing them out of apparent interest. Their persistence can make individuals feel obliged to explain their situations, even though this involves revealing intimate details. Reacting assertively to nosiness or society’s exclusion results in blame being handed back to the disabled person and labelling them pejoratively as a ‘crip with a chip’.

In acute illness it is feasible and acceptable to gain temporary exemption from normal social obligations; however, this is not always possible for people with long-term conditions. Parson’s (1951) conceptualisation of the sick role makes sense of illness as a social state, but its applicability is questionable in this context, since it implies a duty to recover. The sick role does, however, grant medically mediated access to services and explains why the concordance of people with long-term illness with treatment is expected in the same way as those who are acutely ill (Field & Kelly 2007).