Chapter 1
Definitions, Models, Needs
This chapter first defines what is meant by the term âlearning disabilitiesâ, examines two contrasting models of the phenomenon and then explores the information needs â and provision â 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 âusabilityâ and âaccessibilityâ, 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), âthree 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 onsetâ. Note that the term âlearning difficultiesâ also appears in the literature. However, in the UK, the latter term includes children and young people who have so-called âspecific learning difficultiesâ, but âwho do not have a significant general impairment of intelligenceâ (BILD, 2018: p. 4). Dyslexia is an example of a specific learning disability. Other writers term the condition âcognitive disabilitiesâ or âintellectual disabilitiesâ. The latter is the preferred term of the World Health Organization, which defines it as âa 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 abilitiesâ (WHO, 2007: p. 101). The term âmental retardationâ, whilst considered inappropriate in the UK, is still acceptable internationally (see, e.g. Eili, Kvale, Lars-Göran Ăst, & 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 âlearning disabilitiesâ, 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 âmildâ, âmoderateâ or âprofound.
BILD (2018: p. 7) offers a very clear and succinct summary of these âdegrees of disabilityâ. Those with mild learning disabilities âare 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 formsâ. People identified with moderate learning disabilities tend to âhave 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 supportâ (p. 7). Just for completeness, although not participating in the present study, individuals with profound learning disabilities âneed 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 issuesâ (p. 7). The classification can also be based on IQ as well as on abilities. People with an IQ of 50â70 are considered to have a moderate or mild learning disability; those with an IQ of 20â50 a severe learning disability and people with an IQ of less than 20 a profound disability (WHO, 2007).
Models of Disability
Various âmodelsâ of learning disability are adopted in the research literature â 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 âsocialâ model and the âmedicalâ model. The latter, as might be expected, âconcentrates 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 severitiesâ (British Red Cross, 2009: online). Importantly, âthe definition essentially refers to the location of the disability in the person, [and] ⊠as a characteristic of the personâ (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 âdisabledâ individual. Indeed, the model posits that those with impairments need not be âdisabledâ 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 âenableâ people. A perfect example is given in a Red Cross briefing paper (British Red Cross, 2009: online) is that of âa deaf person wanting to attend a conferenceâ. The paper explains:
If no sign language interpreter is there, or no loop for a hearing aid, ⊠the person is excluded â 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 âwe 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 (âthis child has learning difficultiesâ) to the social model (âthis classroom/school is set up in such a way that it is difficult for all children to learnâ) and a focus on the teacherly practice that can bring this aboutâ.
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 â 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 âintellectual disabilitiesâ 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, âThe Road Aheadâ (Tarleton, 2004; Townsley, 2004), has examined the topic of information needs and provision around âtransitionâ. 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 â access to transport and equipment;
- Money and benefits â 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 â living alone, living with a family in a placement, etc.;
- Sexuality and sexual relationships;
- Friendships â 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 âFriends for Lifeâ research project, described as âan internationally recognised programme that teaches children and young people techniques to cope with anxiety and promote well-being, social and emotional skills and resilienceâ. A guide for practitioners and a background paper is available (see FPLD, 2019: online). For another project âWhat About Usâ, âEasy-readâ 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 âHow to feel good about yourselfâ or how to be âSafe and happyâ, 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 â 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 âmainstreamâ football report may be. It starts: ââNot since Boston dumped it in the sea has England been dissed with tea like this,â declared the front page of Wednesday's New York Postâ (Short, 2019: online). Features of this sentence include a quote from another article, the word âdissâ, which may be unfamiliar to a large number of readers (with or without learning disabilities!) and the pronoun (âitâ) appearing before the noun it represents (âteaâ). The next sentence explains that âAlex Morgan's âtea drinkingâ goal celebration, after heading the winner against England to send her side into the World Cup final, was definitely a dissâ (not a sentence a teacher of English as a foreign language might chose to use in a lesson on clarity!). The following sentence reads: âAs 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 ruleâ. Not much about the game, so far! (and what does 'burn' mean in this context?)
This example illustrates how difficult it is to find âgeneralâ 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 âEasy-readâ and âlearning disabilitiesâ made in June 2019 returned pages advertising âEasy-read pictures for learning disabilitiesâ; 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 âhelp people with learning disabilities better understand health, illness, lifestyle and treatmentsâ, including âFive portions of fruit & vegetables a dayâ and âDrinking enough fluidâ (NHS, 2014). There is also information around topics such as âprimary careâ and âacute hospitalsâ. Another example is that of âChange Peopleâ, âa human rights organisation led by disabled People [sic], working to build an inclusive societyâ. A range of âeasy-readâ 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 âhow to feel good about yourselfâ. Although these are all important, it would be nice to find a Website such as an âEasy-readâ newspaper with film reviews, information about Brexit (the hot topic of 2018â2019) 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 âa lack of agreement on an accepted definition of [this term]â (Lacerda & Von Wangenheim, 2017: p. 96). 1 Mariger (2019: online) points out that âmany users and developers mistake usability for accessibility and vice versaâ and provides a simple contrast, explaining that âwhereas usability considers how easy a site is to use and understand, accessibility is concerned with whether you can get there at allâ. She argues that excellent accessibility might not make a site usable nor vice versa: âa 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 unusableâ.
Thatcher (2018: online) provides a very simple definition of accessibility: âTechnology is accessible if it can be used as effectively by people with disabilities as by those withoutâ. 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 âWCAG 2.1 incrementally advances Web content accessibility guidance ⊠but underscores that not all user needs are met by these guidelinesâ (W3C, 2018).
Moving to the concept of âusabilityâ, there have been â by contrast â many and varied definitions in the context of information technology. Jakob Nielsen defines the term as âa quality attribute that assesses how easy user interfaces are to useâ (Nielsen, 2003). Oztekin, Kong, and Uysal (2010: p. 455) offer a more detailed definition. For these co...