Learning Disabilities and e-Information

Navigating the Electronic Hypermaze

Peter Williams

• Publisher: Emerald Publishing Limited
• Year: 2020
• Print ISBN: 9781789731521
• eBook ISBN: 9781789731538
• Topic: Education
• Subtopic: Education Technology

Digital Technology is becoming ever more used by people with learning disabilities for information, entertainment and to enjoy self-expression. Despite this, there is a paucity of research into how this cohort negotiate electronic interfaces, interpret images, navigate pages and read online; what barriers there might be, and how these could be obviated. This book explores these issues, establishing how these and other factors facilitate or inhibit information access and behaviour more generally. There are plenty of guidelines and accessibility standards regarding electronic information presentation, but most are outdated or have been formulated without empirical evidence. Unlike prior literature this book is the result of many years's research in the field, considers specific information contexts, and develops new concepts in information behaviour. It is written in non-technical, jargon-free language, relevant for academics, students and professionals; from human-computer interaction researchers, learning disability specialists and information scientists to formal and informal carers and supporters, college tutors, family members and others.

Chapter 1

Definitions, Models, Needs

This chapter first defines what is meant by the term ‘learning disabilities’, examines two contrasting models of the phenomenon and then explores the information needs – and provision – for the cohort. It notes that these are in general the same as everyone else, although providers need to take into account the language used and other aspects of its presentation. Following from this, the chapter details various definitions of ‘usability’ and ‘accessibility’, the former concept of which permeates the rest of the book.

Definitions of Learning Disabilities

Somebody with a learning disability has significant impairment of intellectual capacity, although the term covers a very wide range of cognitive levels (WHO, 2007). This is often accompanied by some problems in adaptive, or social, functioning. According to BILD (the British Institute of Learning Disabilities) (Holland, 2011: p. 3), ‘three criteria are regarded as requiring to be met before a learning disability can be identified or diagnosed. These are intellectual impairment (IQ), social or adaptive dysfunction combined with IQ [and] early onset’. Note that the term ‘learning difficulties’ also appears in the literature. However, in the UK, the latter term includes children and young people who have so-called ‘specific learning difficulties’, but ‘who do not have a significant general impairment of intelligence’ (BILD, 2018: p. 4). Dyslexia is an example of a specific learning disability. Other writers term the condition ‘cognitive disabilities’ or ‘intellectual disabilities’. The latter is the preferred term of the World Health Organization, which defines it as ‘a condition of arrested or incomplete development of the mind that can occur with or without any other physical or mental disorders and is characterised by impairment of skills and overall intelligence in areas such as cognition, language, and motor and social abilities’ (WHO, 2007: p. 101). The term ‘mental retardation’, whilst considered inappropriate in the UK, is still acceptable internationally (see, e.g. Eili, Kvale, Lars-Göran Öst, & Hansen, 2019; Zhao, Du, Ding, Wang, & Men, 2020), and the American Journal of Mental Retardation, despite a name change to American Journal on Intellectual and Developmental Disabilities still appears in search results. These terms are all synonyms of the term ‘learning disabilities’, and so quotes are taken freely from literature that uses any of these alternatives.

The degree of learning disability can be measured with reference to:

• Intelligence quota (e.g. WHO, 2007);
• Performance compared with people without learning disabilities on normative scales such as reading ages (Ware, 1996);
• Functional skills (Kleine & Camargo, 2018);
• Required support (Edwards & Luckasson, 1992).

It is common in social care or in assessments for benefits, for example, to classify learning disabilities as being ‘mild’, ‘moderate’ or ‘profound.

BILD (2018: p. 7) offers a very clear and succinct summary of these ‘degrees of disability’. Those with mild learning disabilities ‘are often independent in caring for themselves and doing many everyday tasks. They usually have some basic reading and writing skills … [and] still need appropriate support with tasks such as budgeting and completing forms’. People identified with moderate learning disabilities tend to ‘have some language skills that mean they can communicate about their day to day needs and wishes. People may need some support with caring for themselves, but many will be able to carry out day to day tasks with support’ (p. 7). Just for completeness, although not participating in the present study, individuals with profound learning disabilities ‘need a high level of support with everyday activities such as cooking, budgeting, cleaning and shopping. … Some people have additional medical needs and some need support with mobility issues’ (p. 7). The classification can also be based on IQ as well as on abilities. People with an IQ of 50–70 are considered to have a moderate or mild learning disability; those with an IQ of 20–50 a severe learning disability and people with an IQ of less than 20 a profound disability (WHO, 2007).

Models of Disability

Various ‘models’ of learning disability are adopted in the research literature – and, indeed, less explicitly, in policies and practices of organisations, agencies and institutions which work with people with learning disabilities. Two very influential and contrasting models are the ‘social’ model and the ‘medical’ model. The latter, as might be expected, ‘concentrates on disease and impairments. It puts what is wrong with someone in the foreground, [and is] concerned with causes of disease. It defines and categorises conditions, distinguishes different forms and assesses severities’ (British Red Cross, 2009: online). Importantly, ‘the definition essentially refers to the location of the disability in the person, [and] … as a characteristic of the person’ (Thomas & Woods, 2003: p. 15). Disability rights activist Mike Oliver opines that the medical model considers that barriers faced by disabled people can only be mitigated by treating the individual, rather than making adaptations for them (Oliver, 2009). This is a view strongly contested by those who point out that treating an individual does not exclude the practice of also making adjustments (see, e.g. Bindman & Kripalani, 2014; Shakespeare, 2010).

The social model eschews focusing specifically on the person or looking at impairments as only affecting the ‘disabled’ individual. Indeed, the model posits that those with impairments need not be ‘disabled’ at all. It thus shifts the burden from the individual who has to overcome disabilities to society which ethically (and practically) needs to make suitable adjustments to ‘enable’ people. A perfect example is given in a Red Cross briefing paper (British Red Cross, 2009: online) is that of ‘a deaf person wanting to attend a conference’. The paper explains:

If no sign language interpreter is there, or no loop for a hearing aid, … the person is excluded – disabled. But with a signer … or a loop, the person can take part just the same as anyone else. They still have the same hearing impairment. But they are not disabled.

From this it is clear that it is adjustments in the environment that enable inclusive participation. Abbott (2007: p. 11) adds that ‘we have seen a far-reaching change in the understanding of people who are not learning effectively. This has been characterised by a move away from the medical model (“this child has learning difficulties”) to the social model (“this classroom/school is set up in such a way that it is difficult for all children to learn”) and a focus on the teacherly practice that can bring this about’.

The research reported here is rooted in the social model of disability (albeit without the distain for medical interventions shown by critics such as Pfeiffer, 2002). The research proceeded on the basis that it is possible to provide meaningful information to people with learning disabilities through the medium of the Internet, given an appropriate level and style of writing, accessible Website design and considered support. In other words, the disability is minimised by the adapting of the (in this case, information) environment. Considering Webpages or other electronic information, one can say that the optimal construction (or adaptation) of such resources enable people who might otherwise be excluded, to have access to information, advice and opportunities for self-advocacy.

Having established the nature of learning disabilities, and two leading models of it, this chapter turns now to information needs.

The Information Needs of People with Learning Disabilities

Just like everyone else, people with learning disabilities have information needs. They may well want to know, just as others would, where the local football team is playing next, what's showing at the cinema or if an umbrella is needed for later in the day. This book is being completed as the 2019 UK general election unfolds, and no doubt many people with mild or even moderate learning disabilities wish to have information on the parties, candidates, policies, etc. Of course, as with anyone else, they are only able to understand information if it is presented in an appropriate manner according to their abilities and vocabulary. Many individuals with learning disabilities have difficulties in accessing and processing information because of the way in which it is presented. For example, there is a heavy reliance on conventional forms of communication, such as text, even in electronic media such as the Web, leaving them vulnerable to disempowerment.

Over a decade ago, in a rare study of library provision for people with learning disabilities, Holmes (2008) lamented a lack of research in the area. Almost nothing seems to have changed in the intervening years – there has been little research on the topic of information needs or provision for this constituency, and even less of the use of information technology to meet those needs. Tuffrey-Wijne, Bernal, Jones, Butler, and Hollins (2006) studied the information needs of people with ‘intellectual disabilities’ affected by cancer (either by being patients or having a close relative with it) and found that their research participants had not been provided with adequate information even though they expressed considerable desire for it. This was because their families were concerned such information would cause unnecessary stress.

Few other studies have looked at information needs for the cohort. Indeed, to date only one study, ‘The Road Ahead’ (Tarleton, 2004; Townsley, 2004), has examined the topic of information needs and provision around ‘transition’. Below is a bullet-point summary of the thematic information needs identified:

• Safety and risk;
• Health services/Health action plans;
• General health and diet;
• Rights to services and support from adult social work teams;
• Travel – access to transport and equipment;
• Money and benefits – age-related benefits; carers' needs assessments; earning money; money management; having a bank account;
• Education and learning opportunities, activity centres, etc.;
• Careers and employment, employment agencies, supported work, etc.;
• Housing and accommodation – living alone, living with a family in a placement, etc.;
• Sexuality and sexual relationships;
• Friendships – importance of friends, making new friends;
• Leisure options and activities.

The Road Ahead also identified a poverty of usable and accessible information about transition in formats that suited young people with learning disabilities. Models of content that user testers identified as useful were particularly those created by the cohort themselves and content using rich media (animation, photos and graphics) to share people's individual experiences.

There are some rare examples of this practice. The Foundation for People with Learning Disabilities (FPLD) is one organisation which adopts this practice, undertaking many such initiatives, often in conjunction with other organisations. An example is a ‘Friends for Life’ research project, described as ‘an internationally recognised programme that teaches children and young people techniques to cope with anxiety and promote well-being, social and emotional skills and resilience’. A guide for practitioners and a background paper is available (see FPLD, 2019: online). For another project ‘What About Us’, ‘Easy-read’ information is available via a link to the project's own Website, set up by the research partner, the University of Cambridge (FPLD, n.d.). Here people can find out ‘How to feel good about yourself’ or how to be ‘Safe and happy’, etc.

Of course, information does not have to be advisory, or based on safety, health or other topics that may aid people who are considered vulnerable, for whatever reason. People want all kinds of information – football results, cinema listings and weather information are just three of a myriad of possible examples. Taking the first of these topics, here are, of course, thousands of Webpages crammed with football reports, statistics and analysis. However, many may be very hard to understand for a learning-disabled information consumer. As mentioned in more detail later, Mencap (n.d.-b) make various recommendations around accessible writing. These include avoiding jargon, keeping phrases short and having only one idea per sentence. A glance at a BBC Website report on the 2019 Women's World Cup semi-final between the United States and England shows how far from these guidelines a ‘mainstream’ football report may be. It starts: ‘“Not since Boston dumped it in the sea has England been dissed with tea like this,” declared the front page of Wednesday's New York Post’ (Short, 2019: online). Features of this sentence include a quote from another article, the word ‘diss’, which may be unfamiliar to a large number of readers (with or without learning disabilities!) and the pronoun (‘it’) appearing before the noun it represents (‘tea’). The next sentence explains that ‘Alex Morgan's “tea drinking” goal celebration, after heading the winner against England to send her side into the World Cup final, was definitely a diss’ (not a sentence a teacher of English as a foreign language might chose to use in a lesson on clarity!). The following sentence reads: ‘As the newspaper saw it, Morgan's swipe at Phil Neville's Lionesses was the best burn against the English since a load of tea was chucked in the sea in Boston in 1773, setting in motion American independence from the yoke of British rule’. Not much about the game, so far! (and what does 'burn' mean in this context?)

This example illustrates how difficult it is to find ‘general’ information, such as about sport, popular culture, current affairs or hobbies that is easily read and understood by people with learning disabilities. Searches related to ‘Easy-read’ and ‘learning disabilities’ made in June 2019 returned pages advertising ‘Easy-read pictures for learning disabilities’; Department of Health Easy-read leaflets, such as on alcohol and epilepsy; an Easy-read funeral plan; tips for making Websites disability-friendly, and how to design sites for people with disabilities. So, for example, there is a lot of information to ‘help people with learning disabilities better understand health, illness, lifestyle and treatments’, including ‘Five portions of fruit & vegetables a day’ and ‘Drinking enough fluid’ (NHS, 2014). There is also information around topics such as ‘primary care’ and ‘acute hospitals’. Another example is that of ‘Change People’, ‘a human rights organisation led by disabled People [sic], working to build an inclusive society’. A range of ‘easy-read’ resources are available for free and for purchase (Change People, n.d.). These include on parenting, independent living and health (a major element of the latter being cancer booklets made in partnership with MacMillan Cancer Support).

Of course, all these resources are produced with the best intentions and by or with the help of experts in the field. However, when considering them as a body of information, it is actually rather depressing that people with learning disabilities are considered to need advice on eating fruit, drinking sensibly, understanding cancer, knowing what an acute hospital is and ‘how to feel good about yourself’. Although these are all important, it would be nice to find a Website such as an ‘Easy-read’ newspaper with film reviews, information about Brexit (the hot topic of 2018–2019) and other information connecting people who may find reading difficult, to a wider cultural milieu. An understandable report on the Women's World Cup semi-final would be a good start!

Of course, provision of information online, however readable it might be, may still not be accessible to its target audience. This may be because it is three or four pages deep in a menu hierarchy, be presented in a colour scheme with the background that makes it hard to read, or be on a page the link to which does not describe it adequately. These issues relate to the concepts of usability and accessibility, to which this chapter now turns.

Usability and Accessibility in the Electronic Environment

Although there seems to be extensive literature on usability, there is ‘a lack of agreement on an accepted definition of [this term]’ (Lacerda & Von Wangenheim, 2017: p. 96). ¹ Mariger (2019: online) points out that ‘many users and developers mistake usability for accessibility and vice versa’ and provides a simple contrast, explaining that ‘whereas usability considers how easy a site is to use and understand, accessibility is concerned with whether you can get there at all’. She argues that excellent accessibility might not make a site usable nor vice versa: ‘a Website that has a consistent and understandable visual design but without proper tags and tab functions may be usable but would be completely inaccessible to a person using a screen reader. Conversely, a Webpage that had all of the proper accessibility functions but featured 150 links on one page and required extensive scrolling would be considered highly unusable’.

Thatcher (2018: online) provides a very simple definition of accessibility: ‘Technology is accessible if it can be used as effectively by people with disabilities as by those without’. The sentiment, if not a formal definition, was echoed by the World Wide Web Consortium (W3C) in its first set of guidelines:

Following [these guidelines] will also make Web content more available to all users, whatever user agent they are using (e.g., desktop browser, voice browser, mobile phone, … etc.). (W3C, 1999: online) (emphasis added)

Interestingly, the latest guidelines (2.1) rather more modestly state that ‘WCAG 2.1 incrementally advances Web content accessibility guidance … but underscores that not all user needs are met by these guidelines’ (W3C, 2018).

Moving to the concept of ‘usability’, there have been – by contrast – many and varied definitions in the context of information technology. Jakob Nielsen defines the term as ‘a quality attribute that assesses how easy user interfaces are to use’ (Nielsen, 2003). Oztekin, Kong, and Uysal (2010: p. 455) offer a more detailed definition. For these co...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Table of Contents
• List of Tables
• About the Author
• Prologue
• Acknowledgements
• Introduction: What This Book Is All About
• Chapter 1 Definitions, Models, Needs
• Chapter 2 Issues Inherent in Researching Learning Disabilities
• Chapter 3 The Web and People with Learning Disabilities
• Chapter 4 Methods to Test Website Usability
• Chapter 5 Website Usability – Eliciting the Issues
• Chapter 6 The Use of Images
• Chapter 7 Investigating the Attributes Elicited in Consort
• Chapter 8 `Serial Access´ to Information
• Chapter 9 `Random´, `Direct´ and `Iterative´ Access
• Chapter 10 Examining Website Preferences
• Chapter 11 A Shrinking World: Mobile Devices and Usability
• Chapter 12 Testing the Usability of a Mobile App
• Chapter 13 Facilitating Information Access
• Chapter 14 Conclusion
• References
• Index