Disability and Impairment

Working with Children and Families

Peter Burke

• Publisher: Jessica Kingsley Publishers
• Year: 2008
• ISBN:
  9781846427534
• Topic: Didattica
• Subtopic: Didattica inclusiva

Disability and Impairment introduces professionals working with families to the everyday issues faced by disabled people of all ages in family life.

Peter C Burke shows how social attitudes shape the world of the 'disabled family' either positively or negatively and the effects of stigma. He demonstrates the normality of disability - that children are children whatever their label - and the need for a sensitive professional understanding of the impact of both physical and learning disabilities on family members, in order to improve their quality of life.

This book covers the spectrum of disability issues, and offers information and advice for professionals working with families and disability, explaining the value of family support, how to validate the feelings of siblings with disabled brothers and sisters, tackling social exclusion and understanding the role of lifelong professional help.

Case studies and practice notes make this an accessible reference for social work students and practitioners.

Chapter 1

Disability and Impairment: Theory and Practice

This book is grounded in the reflective experiences of families who participated in research undertaken by the author. It will be seen that disability does actually define individuals in both positive and negative ways and that the issues this raises need to be debated. It is clear, too, that disability should not be the only defining element of the individual, who should define himself or herself and be accepted as such.

The issues faced by disabled people of all ages within the family context are examined here from a needs perspective supported by the social model of disability. The social model is viewed as a social construction, and the overarching need is to do something to ensure that disabled people do not experience encounters that reinforce a sense of disability. Consequently, disability needs a greater social acceptance and the research reported in this text points towards a way of achieving that objective, here with particular reference to child disability. In the familial acceptance of disability, cited research studies will show that the experience of disability transcends the individual with disability and partly becomes the property of siblings, parents and other family members. The professional role requires an understanding of such family matters.

The concept of exclusion will be introduced in explaining social reactions to disability and families living with disability who find their lives limited in various ways. This is also about the incapacity of individuals to control their lives, and the need to provide an opportunity ‘to develop their potential’ (Morris 2001, p.162). It is not about disability as a problem; it is about making disability accepted and understood.

Defining disability and impairment

The terms disability and impairment were chosen deliberately for the title of this book. They mean different things. It is easy to confuse the two, in the sense that an impairment may have a disabling effect. However, their use here will clarify the meanings of disability and impairment and so reduce any potential for confusion between the two terms. Exploring this will also enable a better understanding of their usage and application in professional practice.

Disability is viewed as some limitation imposed mainly by social experiences and opportunities that restrict an individual’s ability to engage with others or to access specific locations. This view of disability sees it equating with the experience of ‘social exclusion’, where the perceived disability, due to imposed social barriers, effectively denies opportunity to participate and be involved with others. Impairment, on the other hand, is centred more on the individual, reflecting a type of functional difference when one person is compared with another. As Oliver (1996, p.13) clarified in talking about loss, disability is more about the comparative loss of opportunity in social settings, possibly through deliberate exclusion, whereas an impairment is an actual loss through an injury, illness or congenital condition. The former is more about attitudes and location, an external reality, compared with the latter which is more about an individual’s physical and intellectual debility, an internal effect.

Barnes and Mercer (2003, p.66) reflect on the separation of impairment from disability using UPIAS (Union of Physically Impaired Against Segregation) and the Disabled People’s International (DPI 1982) representations to explain that an impairment is a medical or professional determination of a ‘bio-physiological limitation’. Thus, an impairment exhibits a physical and/or intellectual difficulty rather than a limitation imposed by an external source, as might be experienced in a social setting. Alternatively, disability, as referred to by Thomas (1999, p.39), is about restrictions of activity that result from social experiences; and although an aspect of illness and impairment are disabling, disability as a social obstruction is not the same as an impairment.

‘Impairment’, to clarify the term, is to do with individual differences in functional activities, usually related to a ‘diagnostic difference’. Examples might include experience with visual or hearing impairment, intellectual impairment to signify learning disability, or something personal that creates a difficulty in doing things that others may take for granted. Any manifestation of physical, intellectual and social restrictions needs to be minimised if not eliminated to reduce the social consequences of defining an individual’s disability. An impairment will remain as a condition understood by the individual who may take measures to reduce its impact, or choose not to do so.

However, ‘disability’ tends to be the generalised term that is more often used, and so it is in this text; although, in reviewing models of disability, an understanding of impairment helps locate the disabled person between the medical and social models of disability, described in Burke (1993) as a person-centred approach. Consequently, the term ‘disability’ will appear as the overarching word inclusive of impairment and learning difficulties, underpinned by this conceptual distinction between disability and impairment.

Models of disability

According to Gillespie-Sells and Campbell (1991) the medical model of disability views disability as a condition to be cured. This is hardly surprising; the mainstay of medical training is about preventive treatment or curing illness, so a pathological orientation is to be expected. It is from such an idealised position that a person with a disability is viewed as someone needing treatment. Treatment is typically based on symptoms of illness which, according to Penn (2005), often means administering a drug, surgery or even palliative care. However, if an individual is considered only in treatment terms the pathological overrides the individual’s sense of being. The person is objectified as though identified more with a condition, whether that is a diagnosed medical condition or, indeed, a clarification of a disability.

Thurgate and Warner (2005) comment on the difficulty of the medical model to incorporate the non-medical impact of living in disadvantaged conditions. They suggest that assumptions may be made about the level of disability experienced by the individual when, in fact, the disability is actually a reflection of the social environment. Clearly, individuals exist beyond the limitations of their diagnosed medical conditions, and it is recognising that sphere of relationships which helps define the individual and the need for a medical diagnosis. Indeed, in determining the impact of disability it is the social model of disability which aids our understanding of the cumulative effects on the individual of encounters with the medical profession and social experiences alike.

A social model indicates that disability is exacerbated by environmental factors and consequently the context of disability extends beyond the individual. Physical and social barriers may contribute to the perceived disability experienced by the individual (Swain et al. 2004). Questions may be asked, following the suggestions of Oliver (1990), such as ‘What external factors should be changed to improve this person’s situation?’ For example, the need for attendance at a special school might be questioned if there is a more inclusive alternative within the locality, rather than assuming that the child with a disability must attend a special school. This is like saying that a disabled person must be monitored by a consultant rather than visiting a general practitioner when needing to do so. Consequently, in the school example, mainstream education might be preferable for many or most children with disabilities, but it is only viable if accompanied by participative policies of inclusion, encouragement for the child at school, and classroom support.

The social model should promote the needs of the individual within a community context such that the individual does not experience social exclusion because of his or her condition. In the example given, rather than withdrawing the child from the everyday experiences of others, integrated education would mean that he or she is part of the mainstream: it is a kind of normalisation process. The social model simply encourages changes to be made to the social setting so that the disabled individual is not disadvantaged by situational, emotional or physical barriers to access. Banks (1991) suggests that cultural misunderstanding is created by a sense of difference between minority groups attempting to exist within a dominant culture. Goodley (2000, p.36) proposed an inclusive social model of disability which, in relation to learning difficulties, recognises the social origins of ‘learning difficulties’ and ‘difference’, as indicating attitudinal reactions, but suggesting that whatever the causation of such difference, distinctions are not necessarily made in all cultures. Yang and McMullen (2003) show that learning about the culture of others may help us to improve our understanding of cultural differences with the implicit assumption that disabilities should not equate the term ‘disability’ with ‘less able’ in our society.

Models of disability seek to explain disability as a consequence of social experience, where social interactions between individuals transmute an impairment into a barrier which makes people with an impairment feel a greater sense of being disabled due to their treatment by others. The experience of socially constructed disability that results suggests that disabled people are subject to oppression by non-disabled people (Shakespeare and Watson 2002). This means that the disadvantage of disability arises from the unequal status that disabled people experience. The types of disadvantage experienced by disabled people also include restrictions imposed by access difficulties. An example that illustrates this most simply is that of the wheelchair user who cannot use a building due to the steps that have to be negotiated, an experience encountered by the author (Burke 2004, p.129). In such a situation, the steps reinforce an identity as disabled, whereas ramped access would not. It is clear that the way individuals interact in everyday life, where attitudes define disability through the process of stigmatisation mentioned earlier, or where access is problematic, all serve to reinforce a sense of disability for the individual with an impairment.

The medical model is criticised for its representation of an unequal power relationship between the professional and service user. Furthermore, it continues to ‘objectify’ disability and has the same pervasive problems as the individual model of impairment. The social model is criticised for its neglect of impairment at an individual level (Read 2000). According to Crow (1996, p.216), the social model is flawed because it appears to determine disability by a mainstream response, such that the sense of the individual with an impairment is lost. The medical model can be seen as taking power away from the person with the disability because those requiring treatment necessarily view doctors as possessors of medical knowledge, and consequently patients may succumb to medical authority. However, such views neglect the power of explanation of the social model, which defines disability by social actions; impairment is an individual experience, ‘disability’ is a restriction imposed by attempts at social engagement. The need is to incorporate both views, recognising the level of impairment and minimising social restrictions rather than assuming one is correct and the other is not.

The sense that the medical world is concerned with diagnosis and treatment does not auger well for those whose condition is not curable. The pathology of a medical condition, in a sense, overtakes the human condition, so the discussion of need concerns health status and symptoms rather than the individual. Largely, this is inevitable. It would be foolish to maintain that doctors and professions allied to medicine do not have an important part to play in learning disabled children’s lives or that medicine should not be about diagnosis and treatment: we all have need of these skills and knowledge at some point in our lives.

The social context is crucial, therefore, for an understanding of individual needs and social interactions. Medical conditions should not get in the way of attending to individual social needs. In proposing an integrated approach in Burke and Cigno (2000), the attempt was to represent elements from both the medical and social worlds. The medical need is properly recognised in understanding the impact of impairments on the individual; but so is the social world, where the context of living with an impairment necessarily incorporates interactions of a social type, recognising and acting on any restrictions that this might impose.

The balance between the medical and the social has to be right. Recognising the contribution of different professional involvements helps that understanding. These issues are more easily addressed in multi-agency settings. A multi-agency approach, especially where medical, educational and social welfare professionals work under one roof and undertake multidisciplinary assessments, is one way forward.

Community care

At any one time, up to 1.5 million of the most vulnerable people in society are relying on social workers and support staff for help. Social care services also make a major contribution to tackling social exclusion (DoH 2007). The sense of community care is simple enough; the community should help with the care needs of its members. But simplicity was never the arbiter of practice, so it took the Griffiths Report (Griffiths 1988) and the NHS and Community Care Act 1990 to emphasise the need for care in the community with the suggestion that meeting needs rather than fitting people to available resources should be the way to provide services.

The problem is that resourcing those needs becomes an issue, so any suggestion about meeting wholesale needs is doomed if needs become an escalation of ‘wants’ rather than what is reasonable provision. The issue is that a principle-based vision of meeting needs clashes with a resource manager in control of finite resources. At some point the two are in conflict; that may vary from providing simple resources like a ‘bath aid’ or the refinements of some major adaptation to a service user’s home. It seems that care and services can, for some, if not all, only result in a sense of failure to meet community needs.

When identifying a ‘cycle’ to this process (Burke and Cigno 1996, p.26) the situation of someone needing residential care is exemplified. The need for care in the community is potentially in conflict with the need for residential care in the community. This may be more familiar with the needs of older people when some become less able to manage their own care needs; but it is also a feature of the needs of young people with profound disabilities if and when their families cannot manage to provide the necessary care at home. When care is provided within the family home, and the family is meeting the care needs of an individual, that cannot and should not be called community care (whereby the community provides for care needs), although it is ‘care in the community’ because the family is living in the community. The reality may well be that care in the family home lacks a community identity, and community care would involve carers assisting with the care needs of the family.

The ethos of provision of care for the community is a failure in terms of the policy intent, particularly relating to the needs of disabled children. Community identities should be prescriptive to individual choice and lifestyle. The intent must be that social care services meet the proposals of the Green Paper Every Child Matters, now implemented in the Children Act 2004. This puts children first when supporting families, a message promoted earlier in Utting (1995) which identifies the legal duty of cooperation required in meeting child and family needs for short and longer-term needs. The latter utilises a Common Assessment Framework for Children and Young People (Department for Education and Skills (DfES) 2006, p.2) across the professions involved in social care.

Assessing the needs of children with disabilities

The study of prevalence of disability in children and young people, according to the National Statistics (2004), lacks accurate and good quality data at a national level so it is difficult to establish any clear long-term trends. However, in 2000, the number of severely disabled children was reported to be consistently more than double for boys than for girls of the same age group (ESRC 2006). The Department of Works and Pensions (DWP 2006) estimated that there were over 700,000 disabled children in the UK, which equates to around 1 in 20 children. This contrasts with Emerson and Hatton’s (2005) estimation that in Britain there were approximately 1.2 million children under 17 who could be considered ‘at risk’ of disability. This clearly reflects differrng approaches in defining disability. Nevertheless it is clear that a substantial number of children have some form of disability, and consequently the position of the child, siblings and families should be assessed to provide a better understanding of their needs.

It is evident that children with disabilities have individual needs, reflected in the Children Act 1989 (s17(10)(c)). Their lives will not be the same as those of their peers, and even if disability were not an issue, the sense of having an impairment makes a difference which separates their experiences from those of others. Clearly, their needs and those of their families should be identified and met by providing the necessary services; and if it is not possible to identify the child’s view of his or her needs, then that of the nearest family member, usually a parent (often the mother), should be sought.

Professional workers are also required to identify what family members say they need to help themselves, and to gather their reflections on what is useful, along with professional views, observation and consideration of such needs – and from these findings formulate what should be the professional response. This is basic to the ASPIRE model with its stages of ASsessment, Planning, Interventions, and Review and Evaluation which acts as a guide to the staging process of meeting needs (Burke and Cigno 2000, p.9; Sutton 1994, p.26). However, it should be clear that presenting ...