Understanding and Responding to the Experience of Disability

Jill Porter

• Publisher: Routledge
• Year: 2014
• ISBN:
  9781317650904
• Edition: 1
• Topic: Education
• Subtopic: Education General

Understanding and Responding to the Experience of Disability informs readers about current understandings of disability and ways of recognizing the needs that arise from the lived experience of impairment in schools. While most schools have clear procedures in place with respect to identifying children with special educational needs, the same is not true for disability. Moreover, research suggests that many schools have restricted understanding of this distinction, often equating disability to children with SEN and children with health conditions, thereby failing to recognize the pivotal role of impact.

In this insightful text, Jill Porter argues that disability needs to be understood within the setting in which it is experienced, thereby recognizing that it is not a fixed attributable label, but one that is cultural, contextual and fluid. By providing a theoretical basis for understandings of disability around notions of impairment, experience and impact, the book combines three key components:

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• a conceptual understanding of disability – to provide a clear value driven framework for professional responses;

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• an empirical illustration of the development of materials to support an understanding of why the process of disability data collection cannot simply be reduced to two questions on a form;

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• embedded illustrative case study material to provide exemplars of how the materials can be contextualized and used to make adjustments to enhance the participation of all children.

Chapter 1 Why the need for disability data?

DOI: 10.4324/9781315763316-1

Introduction

A human rights approach has provided the catalyst for schools and other public bodies to review the ways in which their policies, practices and procedures can discriminate against disabled children. A series of legislative acts have provided a common definition, one which identifies the pivotal role of the impact of impairment on the daily life of the child. While most schools have clear procedures in place with respect to identifying children with special educational needs (SEN), the same is not true for disability. Moreover research suggests that many schools have restricted understanding of this distinction, often equating disability to children with SEN and children with known health conditions, failing to recognize the pivotal role of impact on daily life. Additionally they may be unaware that some children’s conditions are rendered invisible to school through the development of coping mechanisms that limit the opportunity to fully participate in all school activities. The first aim of this book is therefore to increase policy-makers’ understanding of the term disability and to surface the contradictions and tensions that exist.

A rights approach creates the need for categories – at its simplest disabled or non-disabled – in order to safeguard needs. The World Health Organization’s approach to disability suggests the use of finer and finer gradations of categorization can provide a mechanism for collecting and comparing disability data, taking into account impairment, functioning and participation. This however creates an overly bureaucratic system for schools and other services with debatable scientific value. As Rouse et al. (2008) state: ‘it would seem sensible to develop systems that have the capacity to understand difficulties in the social and educational context in which they occur’ (p. 266). In this book I argue that disability needs to be understood within the setting(s) in which it is experienced, thereby recognizing that it is not a fixed attributable label, but one that is cultural, contextual and fluid. Tools are needed therefore which set a child’s health condition or impairment within the context of its impact on participation in the home, community and school, AND recognizes the barriers and supports that are in place. The second aim of the book is to enable policy-makers to go beyond recognizing the need for individual adjustments and respond proactively in making schools better places for learning for all children.

Understanding disability

Through the Disability Discrimination Act (DDA 1995) we have been provided with a precise definition of disability and this has been reinforced in subsequent acts: namely the presence of an impairment (or health condition) that has lasted for a year or more (or is likely to) and which has a substantial effect on daily life. The legal definition was extended in 2005 to include health conditions of HIV, cancer and multiple sclerosis, and these health conditions were recognized from the point of diagnosis. Also covered in the definition are issues of mental health and medical conditions such as HIV and facial disfigurements (highlighting the importance of recognizing that ‘impairment’ can only be viewed within the context of its impact). While a medical professional might be well placed to identify the presence of a health condition or impairment, disability is experienced and self-disclosed. As a recent document from the Office for Disability Issues outlined:

Disability is the dynamic interaction between impairment and attitudinal and environmental barriers that hinders a person’s full and effective participation in society on an equal basis with others (UN Convention on the Rights of Disabled People) … Environmental barriers include all the physical and social aspects of the environment that may affect a person’s experience.

(Department for Work and Pensions (DWP) 2013, p. 12)

Consequently the same health condition can lead to quite different experiences, albeit that statistically some health conditions are more likely to be associated with disabling experiences. For many children and young people the experience will be highly contextualized, dependent on the social and physical environment. For some both the onset and offset will be gradual, reflecting the fluctuating nature of the impairment or health condition. For others there may be a cyclical element. Given the uncertainties and discontinuities that exist for many people it is perhaps unsurprising that in the adult population only around a quarter of people who come under the Equality Act definition think of themselves as disabled (ONS 2012). As we will see this terminology can have negative connotations as well for children.

Terminology is subject to much debate, the language that is used here is the disabled child, reflecting Gleeson’s (1999) view of the importance of putting the oppression first, a political standpoint about the importance of understanding the impact of the environment, including organizational, social and structural aspects, in bringing about change. However one can also infer that the only aspect worth commenting about the young person is their disability, a sentiment that runs contrary to the aims of the book. Chapter 2 will explore the ways in which disability is understood further but here the important message taken from Reindal (2010 b) is that ‘Disability is something imposed on top of the impairment effect, due to ideological, social and environmental consequences’ (p. 130).

Disability is a term that is poorly understood in the general population. In the education world there is confusion between the use of the term special educational needs (SEN) and disability. A disabled child only has a SEN if they have a learning difficulty and require special educational provision to be made for them. Previous research by Ann Mooney and colleagues illustrates the ways in which schools and local authorities (LAs) often conflate disability and SEN (Mooney et al. 2008). While they form overlapping groups, there are substantial differences. About half of children in mainstream education who meet the Equality Act criteria don’t have SEN and equally around half the sample who have special educational needs don’t meet the Equality Act criteria (Porter et al.2010). Part of the confusion lies with having different starting places for the conceptualization of these terms. Arguably the presence of an impairment or health condition is the starting point for asking if the child is disabled. For a child with SEN, the starting point is educational need which is linked to the types of specialist support required and the levels of support provided by schools and/or outside services (Wedell 2008). The discourse for one concerns access and participation, and for the other is around intervention.

This distinction however is often overlooked in government publications, where disability is now added to the term special educational needs, to form a new acronym SEND (or, for Ofsted, DSEN). Indeed confusion is evident in the government’s own Equality Vision when disability is almost exclusively operationalized in relation to outcome measures for children with SEN. Indeed they describe SEN as a ‘proxy’ measure for disability (DWP 2012a). In consequence little attention is paid to the disabled child who does not have a special educational need. A particular implication of this is that the government’s Equality Vision ignores half of all disabled children. Those who are making average progress are overlooked, their potential for achievement capped. This is an important starting place for recognizing the systemic ways in which partial understanding of disability contributes to the marginalization and disadvantage that is experienced.

Understanding and disadvantage

There can be no doubt that the Paralympic Games in 2012 raised the profile of disability, bringing visual experience of people with a variety of impairments directly into people’s homes, in some cases the very first encounter with different bodies. The public has been given the opportunity to witness and celebrate the supreme achievements of sportsmen and women who perform at an elite level. Yet at the same time the media has also revealed scandals of our time, the ways in which disabled people have been harassed and called into account for parking in blue badge bays, how people with learning difficulties have been treated with violence and brutality in homes where the public discourse is one of care. Garthwaite (2011) lists the stark newspaper headlines that ‘depict benefit recipients as the enemy in a battle against fairness and responsibility’. A review of changes in newspaper representation of disability by Briant et al. (2011) also found an increase in pejorative language and a greater focus on benefit fraud. The report concludes: ‘progress on legislation and rights stands in contrast to a relative failure to transform institutions and institutional practices’ (p. 14).

While these very public displays of contrasting attitudes are highly evident, there is much less publicity given to the real disadvantage experienced by the disabled child and their family. Recent secondary data analysis by Blackburn et al. (2010) has revealed how disabled children are more likely than their peers to live in single-parent families, in poverty, in conditions of material hardship, with poorer health outcomes. Their families are more likely to be in debt and living in rented accommodation. They are more likely than other young people to be bullied (Green et al. 2010). They spend more time at home than non-disabled children (Beresford and Rhodes 2008) and their families report difficulty accessing the services they need, to the extent that in 80 per cent of families it causes them anxiety and stress (Brawn and Rogers 2012). Disabled children are more likely to be abused than non-disabled children (Cooke and Standen 2002; Spencer et al. 2005). Ofsted (2012) provide data to indicate that disabled children are also less likely to be protected from harm. They reveal how disabled children’s needs are under-identified and less likely to be on the protection register – despite often being in contact with a range of professionals. In particular there is often a failure to capture their views and concerns. Disabled young people are less likely to leave school with qualifications and the prospect of employment (Burchardt 2005).

The relationship between disability and disadvantage is also a global concern. The 2010 report on the Millennium Development Goals makes explicit reference (for the first time) to disability, by referring to the marginalization of the disabled child in education. Disability has become part of the mainstream international agenda. The United Nations (2011) raises concern that it is not the person’s impairment but their lack of access to resources that is the most pressing issue, their ‘disproportionately high rates of poverty’ (p. vii). As a result all the Millennium Development Goals are relevant to them. The relationship between disability and poverty is complex (Emerson 2012) but this powerful catalogue of disadvantage clearly demonstrates the need for better safeguards and understanding. Schools have an important role to play both in capturing their views and concerns and helping to safeguard their needs and also in enhancing their life chances through supporting them in reaching their potential.

Disability rights

A landmark treaty, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) came into force in 2008 and established disability as a development priority for nations, changing attitudes and approaches to disabled people. It was ratified by the UK government in July 2009, which thereby agreed to its terms including a regular cycle of reporting back to the United Nations, the first of which was issued in 2011. This first report sets out the government strategies for bringing about change, citing the requirement for local authorities and schools to have plans for improving access to the curriculum and to the physical environment with ‘a duty to set out how they are improving this access’ (Office for Disability Issues 2011). The report also recognizes that this needs to be underpinned by data: ‘including ensuring that data collected by different departments can be disaggregated by disability status’. In publishing this report the government held its policies and plans up for international scrutiny and accountability.

The rights of the disabled are given further direction in the recent World Report on Disability where the voice of disabled people frames each chapter (WHO and World Bank 2011). The report culminates in a series of recommendations, translating these to actions for government (as well as for the United Nations). Most pertinent to this book is the recommendation that governments:

review mainstream and disability-specific policies, systems, and services to identify gaps and barriers and to plan actions to overcome them [and] include disability in national data collection systems and provide disability-disaggregated data wherever possible [and] establish and monitor standards.

(WHO and World Bank 2011, p. 268)

Recognition of the rights of disabled people has provided drivers for changes in policy worldwide.

UK policy

The UK policy landscape has changed quite dramatically over the last 20 years, with a possible high point expressed in the publication of Aiming High for Disabled Children in 2007 (DfES 2007) and We Are On the Way in 2008 published by the Welsh Assembly (Welsh Assembly Government 2008). These documents set out to transform the provision of services for disabled young people. Aiming High, for example, resulted in allocating funding to local authorities in England and Scotland, setting out a clear commitment to:

ensuring that every disabled child can have the best possible start in life, and the support they and their families need to make equality of opportunity a reality, allowing each and every child to fulfil their potential.

(DCSF 2007, p. 3)

Furthermore disabled children were to be made ‘a priority at both a local and national level’ (p. 6) in the development and provision of services. In 2011 the Welsh government published an update, The Journey so Far (Welsh Assembly Government 2011), reaffirming their commitment to uphold children’s rights and charting the progress they had made against the agenda set three years previously. In England in 2009 the Lamb Inquiry was set up to report later that year on Special Educational Needs: Assessment and Funding. Fifty-one recommendations were made, many of which included reference to ‘special educational needs and disability’. The report includes concerns both at the level of information and accountability and the extent to which schools and local authorities were meeting their duties:

It is also clear that there are shortfalls in compliance with requirements for published policies on disability: accessibility plans and strategies and disability equality schemes. Many disability equality schemes are not published. Of those that are published, many do not meet the requirements of the DDA.

(Lamb 2009, p. 41)

Despite the references to the legislation, it is however unclear from the report how the term ‘disability’ is being used (whether in fact in the place of impairments).

In 2011 the English government published Support and Aspiration: A New Approach to Special Educational Needs and Disability and in 2013 draft legislation was released for consultation. The document is entitled Reform of Provision for Children and Young People with Special Educational Needs (Great Britain 2012). This document focuses o...

Table of contents

• Cover Page
• Half-Title Page
• Title Page
• Copyright Page
• Table of Contents
• List of figures
• List of tables
• 1 Why the need for disability data?
• 2 Understanding disability
• 3 Collecting disability data
• 4 What data tell us about the support parents value
• 5 What data tell us about children’s experiences
• 6 Using disability data in schools
• 7 From understanding to responding
• Appendix
• Bibliography
• Index