Children's Understanding of Disability

Ann Lewis

• Publisher: Routledge
• Year: 2002
• eBook ISBN: 9781134854035
• Topic: Education
• Subtopic: Education General

Children's Understanding of Disability is a valuable addition to the debate surrounding the integration of children with special needs into ordinary schools. Taking the viewpoint of the children themselves, it explores how pupils with severe learning difficulties and their non-disabled classmates interact.
Ann Lewis examines what happens when non-disabled children and pupils with severe learning difficulties work together regularly over the course of a year. She also includes the views of children working in segregated special education. From her findings, she draws implications for developing an inclusive ethos in schools and other communities.

Chapter 1
Setting the scene

When I was 15 I spent a summer working at a children’s camp run and organised by a national charity. The camp was unusual, not least because, although it was held in one of England’s leading public schools, it was not for pupils from that school. The children who joined the camp made an unusual mix. Half were deemed to be ‘at risk’ due to the high level of poverty in their East London homes. They were surprised, if not overawed, by the school with its wood-panelled rooms, oil paintings and half-hidden trunks of exotic clothes. The London children were initially bemused by the other group of children who came to the camp. This latter group all had severe physical disabilities. They tended to arrive with cases full of medical paraphernalia and letters specifying what they should not, for health reasons, be allowed to do.

When these disparate children arrived I could not imagine how the camp could possibly work successfully. On the second day, Meghan (a 10 year old with hydrocephalus) and Danny (an 8-year-old Londoner) had disappeared after breakfast. As I was supposed to be in charge of these children I was worried about them and embarrassed at this early indication of my ineptitude. I visualised Meghan hiding somewhere in the building and close to death while Danny was hitch-hiking back to London. However, eventually I found the children—both sitting in a large bath, with sponges and scouring powder in their hands, cleaning the bath. Meghan had decided that, as she was never allowed to do anything like that at home, she was determined to get into the bath and clean it. Danny had some idea of what to do, had taken a liking to Meghan, and offered to show her how to clean the sides of the bath. Perhaps they recognised in one another their shared qualities—tenacity, a sense of humour and determined independence. They remained good friends all week and were a constant reminder that I had initially seen, not individuals, but a personification of the labels ‘poverty’ and ‘disability’.

The experience showed me that children are often limited more by others’ expectations and consequent labelling than by intrinsic ‘conditions’. My subsequent involvement in moves towards developing inclusive schools has reinforced this message. I do not know how Danny and Meghan felt about others’ expectations of them. However, what it felt like to be on the receiving end of low expectations has been recalled powerfully by Michelle Thomas:

When I was in school they wouldn’t teach you to write as a letter, they would call letters objects—like they used to call the letter H a chair and they used to say the letter M was a mountain. It was a boarding school—a special school—I went there from when I was 6 to when I was 9. I couldn’t read by then and they said I was unteachable. I was always ill at school and slow at learning things. They said I was unteachable, that I couldn’t be taught anything. That’s why I had to leave. They hadn’t taught me things, only these things—H is a chair, M is a mountain. When I left I was only tiny and I was sorry because I’d made some friends there. I was confused because I didn’t know why I was leaving, I didn’t understand that I hadn’t learned anything. I left school on the Friday and I thought, ‘Oh, I’ll be back on Sunday’ but I didn’t go back…I didn’t understand until my mother said, ‘You’ve left school, they’ve taken you out of school, they said you were unteachable’.

(1990:33)

An alternative view, highlighting the impact of positive expectations, is described by Donna Williams in her autobiography. She comments that the only thing she missed in her schooling was ‘inclusion’, by which she means acceptance by other children and teachers. One high point for her was a particular teacher:

Mr Reynolds never emphasised disability, but instead allowed me to show him what I was capable of, and he would tell me things which I did better than the others…His mood never changed. He never seemed to betray my trust.

(1992:42)

ETHOS

This book explores what happened when children and young people from special schools (for pupils with severe learning difficulties) and mainstream schools worked together regularly over a series of school years in an attempt to develop integrated classes. Doing this meant changing both sets of schools. In this process the schools set out to learn from, and through, collaboration with one another. Many, although not all, of the staff in the schools shared a belief that ultimately, and with the necessary resources, many pupils from special schools could and should be educated effectively alongside mainstream school peers. They believed that this would be to the benefit of both special and mainstream school pupils. This reflected a wider underlying belief that disabled people should be included as fully as possible in their local communities.

Tackling this broader issue raises questions about care in the community, the role of advertising in promoting images of unrealisable physical perfection at one end of the scale and helpless invalidism at the other, and the roles and portrayal of charities.
These are beyond the scope of this book but all relate to the polarisation of disabled and non-disabled people.

This polarisation masks four things which have relevance for integration at school level. These are, first, a merging, in reality, of disabled and non-disabled categories. We are all, to some extent and in some ways, disabled. Recognising this is a deterrent to condemning the disabled as abnormal and treating the minor imperfections of us all as faults to be denied or disguised. Some commentators acknowledge the converse of this by referring to the ‘differently gifted’ or ‘differently abled’.

Second, disabled people are as diverse as the rest of the population and grouping them under disability labels encourages a false homogeneity in perceptions of those people. This needs to be borne in mind when reference is made later to pupils at particular types of special schools.

Third, presenting the disabled as a discrete and relatively dependent group obscures our common interdependence.

Fourth, while physical or mental perfection and individual autonomy are valued above imperfection and dependence, the members of society who are seen as reflecting the latter qualities will remain pitied or patronised.

TERMS

Integration

In the literature there has been increasing dissatisfaction with the term ‘integration’ because it has often been used or interpreted in a narrow sense of placement only. Children moved from any special to any mainstream school context may be said to be ‘integrated’. Yet this says nothing about the quality of that integration. What one person describes as integration may be seen by another person as segregation in a new form. The American term ‘main-dumping’, to describe a child with disabilities or learning difficulties who is placed in an unready or unwilling mainstream school, conveys this ambiguity. Placement in a mainstream school is a necessary, but not a sufficient, condition for realising the goals of integration. Integration as placement also overlooks the process of moving from a segregated to an integrated system.

Sue Szivos has made a critique of the literature on normalisation (much of which has influenced moves towards educational integration) from a social psychological perspective. She notes,

Herein lies one of the central contradictions of normalisation in that while it purports to revalue people with disabilities, it is rooted in a hostility to, and denial of ‘differentness’…We should also ask whether in denying labels we are also denying and devaluing difference.

(1992:126–7)

Sue Szivos also draws attention to the assumption that to be attributed value, disadvantaged groups should aspire to fulfil society’s idealised norms. The conclusion of her critique is not that we should abandon attempts at integration but that we need to recognise the complexities underlying the process.

Inclusion

As a result of such concerns about the term ‘integration’, the word ‘inclusion’ has come to be used to convey both placement and certain qualities of that placement. ‘Inclusion’ emphasises that what is being described is something that is neither special nor mainstream school but a new amalgam. The difficulty in operationalising such an ideal is illustrated in evaluations of the Australian experiences of moves towards inclusion in Victoria (Mousley et al., 1993). These researchers noted, ‘Ideas arising from the practices of “special” education are being imposed on the integration process, limiting teachers’ visions of educational opportunity for all…. Teachers are regarding integration as being yet another form of specialism’ (1993:59, 68).

The term inclusion draws attention to the quality of the mainstream school context as a whole and for all children, not just the disabled. Inclusion is described variously as:

Being with one another…how we deal with diversity, how we deal with difference

(Forest and Pearpoint, 1992)

The presence of all learners in one shared educational community

(Hall, 1992)

A set of principles which ensures that the student with a disability is viewed as a valued and needed member of the school community in every respect

(Uditsky, 1993)

These descriptions highlight different emphases in the way in which ‘inclusion’ is used. It may stress attitudes being promoted (notably an acceptance of human diversity and a respect for individuals) and/or to the location of pupils (i.e. in a common institution). Thus inclusion is both a means (a particular ethos) and an end (non-segregated schools). One may have reservations about inclusion as necessarily all-inclusive but still support the ethos being promoted. In theory, an acceptance of diversity could be promoted through segregated systems. For example, it is reported that in the Netherlands a highly differentiated, and growing, special school system is not associated with negative stereotyping of pupils in special education but is seen as a valued specialist resource (Meijer et al., 1994).

The rhetoric of inclusion obscures what is being underemphasised or ignored and leaves underlying value judgements unexamined. In the US context, inclusive schools have been described by some academics as defying straightforward interpretation and they have written of the increasing stridency and insularity about inclusive schools (Fuchs and Fuchs, 1994).
The descriptions given earlier do not refer to two major themes in current educational discourse—parental choice and educational priorities. These are, implicitly, seen as being of secondary importance to the promotion of certain attitudes. Whether one agrees with this is a matter of individual value judgements and will reflect in part beliefs about the extent to which education should be a vehicle for changing society.

Parents and/or pupils may choose or wish for a segregated school. Rightly or wrongly, a totally inclusive system removes this choice. Equally, if inclusive schools are not available then parents do not have the chance to exercise this choice.

Parents and/or pupils may also have different priorities from those advocated by individuals arguing for inclusive schools. For example, the attainment of certain self-help or communication skills may be seen as of over-riding importance by some parents and therefore the preferred educational environment will be the one that best fosters these skills. Two extreme examples of this are given by Robert Henderson (1993) reviewing integration policy in the USA. He reported that alongside some strong parental movements for inclusion, some parents have insisted that their children attend residential special schools. This has happened even when the local school has what it believes to be an appropriate programme for the child. Two major parent groups have been involved: parents of adolescents with severe emotional problems and parents with severe hearing loss whose children also have severe hearing impairments. Some educationalists have argued similarly that education encompasses, rather than contrasts with, care and that curricular entitlement should not deny within-child factors (Jordan and Powell, 1994). From this perspective, a special school may be preferred over a mainstream placement.

A number of writers have made links between the processes involved in developing inclusive schools and the characteristics of effective schools (see Fulcher, 1989; Slee, 1993; Ramasut and Reynolds, 1993). The approach is summarised in Mel Ainscow’s words: ‘I am proposing…that the special needs task is reconstructed as a process of school improvement’ (1993:8). However, overall structures and processes in schools mask variability in individual experiences. As Seamus Hegarty (1993) has pointed out, the effective school is an abstraction and outlines what works for most pupils for most of the time in relation to certain, often narrowly defined, criteria. Moves towards developing inclusive schools need to be examined in terms of the multi-facted impact on individuals, especially all the pupils in whose interests, ostensibly, the changes have been made.

The term ‘integration’ is used in this book when placement is being emphasised; ‘inclusion’ is used when a school ethos that explictly aims to respond to pupils’ diversity is being emphasised.

Normality

Interpretations of children’s behaviour are often referenced to what is deemed to constitute ‘normal’ development. There are two inherent problems in this. First, it underemphasises the variability encompassed by what is ‘normal’; second, normality is assumed to be what typifies the majority—that is, what is usual. Each of these will be considered in more detail.

It is difficult to shift from a normative framework into a conceptual framework that conceives development as varied, encompassing diverse patterns. Developmental scales such as those of Mary Sheridan (1973) and similar checklists distributed at many post-natal clinics identify clear expectations about normality. Some developmental scales provide slightly broader bands but retain the emphasis on ‘normal’ targets (for example, Denver Developmental Charts, Frankenberg, 1981). For example, children are expected to be able to scribble at 2 years and to thread beads at 3 years. This immediately places children who do not scribble and thread at these times as ‘abnormal’. Earlier than this may be regarded as evidence of high ability. Conversely, later than this (or not at all) identifies the child, by implication, as slow. Such a view is entrenched and anomalies such as late developers who are also very gifted (for example, Leonardo da Vinci) tend to be seen as bizarre exceptions rather than as an indication that normality may have been conceived too narrowly.

The possible inappropriateness for the majority of what is deemed to be normal is illustrated by the QWERTY keyboard that is used for nearly all typewriter and word processor keyboards. It is, in practice, very inefficient for most people who are not touch typists. Most users of these keyboards are ‘hunt and peck’ typists using two fingers. The development of keyboards for disabled people may well turn out to have considerable benefits for the majority. ‘Normality’, in this example, reflects only an atypical minority.

In addition to these conceptual problems, value judgements associated with ‘normality’ tend to place it as superior to abnormality. This is curious given the opposite situation in other contexts. For example, rare birds are rated more highly by bird-watchers than are common species, limited editions of a design raise more money at auction than do more usual versions, and a postage stamp with a fault is a treasured find. Jenny Corbett has written a refreshingly vigorous attack on ‘normality’ and concluded, ‘I, for one, would feel most insulted if I was ever labelled “normal”. It seems to embody confinement and restraint; a pinched, arid meanness’ (1991:260).

Impairment, disability and handicap

Impairment, disability and handicap are commonly used and related terms. David Thomas (1978) elaborated the distinctions between them. Impairment is a neutral term to mean the loss of structure or function (such as hearing loss). Disability is the impact of the impairment (for example, poor speech may be the result of a hearing loss). Handicap is the impact of the impairment or disability as...

Table of contents

• COVER PAGE
• TITLE PAGE
• COPYRIGHT PAGE
• CHILDREN'S UNDERSTANDING OF DISABILITY
• FIGURES
• ACKNOWLEDGEMENTS
• GLOSSARY
• TRANSCRIPTION CONVENTIONS
• CHAPTER 1: SETTING THE SCENE
• CHAPTER 2: VIEWS OF CHILDREN IN SEGREGATED SPECIAL EDUCATION
• CHAPTER 3: MOVING TOWARDS AN INCLUSIVE ETHOS
• CHAPTER 4: WORKING TOGETHER
• CHAPTER 5: WORKING TOGETHER
• CHAPTER 6: END OF THE YEAR
• CHAPTER 7: CONCLUSIONS AND IMPLICATIONS
• SUGGESTIONS FOR SELECTED FURTHER READING
• REFERENCES