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02

WHAT IS LEARNING DISABILITY?

AIMS AND LEARNING OUTCOMES:

The aims of this chapter are to:

 Present two ‘dictionary’ type definitions of ‘learning disability’

 Discuss these two definitions

 Highlight the identity of learning disability.

By the end of this chapter you will have gained:

 A basic understanding of the definition and meaning of learning disability from a number of different standpoints

 A basic understanding of how these meanings have changed over time.

Marcel, a 39-year-old man with Down’s syndrome is admitted, having had a stroke, onto the general medical ward on which Hanif works as part of a 2nd year student nurse placement. This is the first time that Hanif has had a patient with Down’s syndrome and he knows very little about learning disability in general and Down’s syndrome in particular. At the handover at the start of Hanif’s shift, he asks: ‘What is learning disability?’

PAUSE FOR THOUGHT 2.1

A nurse, who during a debate at RCN Congress said that he considers himself to have Asperger’s syndrome, was asked: ‘What is this disease called Asperger’s?’ Do you, the reader, consider learning disability to be a disease? Do you consider that learning disability is catching?

INTRODUCTION

What is learning disability? Hanif would be forgiven for asking this question, particularly as he has not previously worked with people who have a learning disability. Following on from this initial question, it may be appropriate that a number of further questions could be asked: What does it mean to have a learning disability? Indeed, to develop this further, what does it mean to be ‘learning disabled’?

A careful reading of the above questions seems to highlight three different issues:

 A possible need for a basic, clear and factual definition of learning disability

 A possible need for a discussion around learning disability as possession in much the same way as having or possessing a broken leg or a broken arm or having a headache

 A possible need for a discussion around learning disability as personal identity.

These are all valid and perfectly reasonable questions to ask, particularly if Hanif has had very little if any previous knowledge or experience of, or exposure to learning disability as either an ‘abstract’ or a ‘physical’ concept or reality. Appropriate theoretical learning and clinical experience opportunities around learning disabilities may not always be available to Hanif.

Again, there could well be a perception that learning disability is a ‘childhood’ condition or there may well be some confusion as to ‘learning disabilities’ and ‘learning difficulties’, with some people thinking that these two terms refer to the same condition or phenomenon. Learning difficulties or specific learning difficulties usually refer to the specific conditions of dyslexia, dyspraxia and dyscalculia. Specific Learning Difficulties (SpLDs) affect the way information is learned and processed. They are neurological (rather than psychological), usually run in families and occur independently of intelligence. They can have significant impact on education and learning and on the acquisition of literacy skills (British Dyslexia Association, 2012).

Hanif, as both a pre-registration nursing student and a future post-registration staff nurse, is very likely to encounter and work with those who have a learning disability in his day-to-day work, regardless of whether he works in a general hospital, in the community or in a GP practice or health centre. As such, Marcel’s sister, Ziva, would like to act as Hanif’s guide in the following pages.

DEFINITION

Hanif: So, Ziva, what does this term ‘learning disability’ actually mean?

Ziva: Thanks for asking, Hanif. Barber (2011) suggested that the term ‘learning disability’ cannot be defined easily. Learning disability can act as a category for a variety of conditions with different causes. Some forms of learning disability are:

 As a result of ‘genetic abnormalities’. Down’s syndrome, phenylketonuria, Marfan’s syndrome and tuberous sclerosis (epiloia) are all examples of genetic causes

 As a result of major difficulties during or immediately after childbirth

 As a result of alcohol or ‘recreational drug’ use during pregnancy

 As a result of environmental factors such as environmental or industrial toxins

Whilst other forms of learning disability just are (otherwise known as ‘idiopathic’)! An idiopathic (from the Greek idios (‘one’s own’) and pathos (‘suffering’)) disease or condition is one whose cause is not known or one that arises spontaneously.

Hanif: Thanks for that, Ziva. However, what you have just presented is some of the causes of learning disability, rather than what learning disability actually is (and is not).

Ziva: Yes, you are quite right about that, Hanif. Sorry. There are a number of ways of looking at the term ‘learning disability’ and hence those with a learning disability. The first of these is to focus on learning disability as a ‘dictionary definition’. Again, there are a number of such definitions that can be looked at. The first of these definitions is taken from the Valuing People White Paper (DH, 2001: 14). According to Valuing People, a person is described as having a learning disability if they have:

 A significantly reduced ability to understand new or complex information (impaired intelligence and cognitive functioning)

 A significantly reduced ability to learn new skills (impaired intelligence and cognitive functioning), with

 A reduced ability to cope independently (impaired social functioning) and

 Which started before adulthood and with a lasting effect on development.

Alternatively, learning disability can be seen as:

 An arrested or incomplete development of mind (Mental Health Act 1983, Section 1)

 That impacts upon most if not all areas of human life: intellectual, spiritual, physical, educational and social

 And ranges in severity and impact from borderline to profound

 With the likelihood of multiple neurological and physical disabilities increasing with serious and profound learning disabilities

 And that often requires additional supportive resources in order to facilitate optimum physical, mental, spiritual, social and emotional health and engagement within society.

Hanif: I think I understand these two meanings, Ziva.

Ziva: However, both of these definitions could be argued to pose a number of questions or problems. First: the Department of Health definition. ‘Valuing People’ was the first learning disability White Paper for nearly a quarter of a century.

Hanif: What is a White Paper, Ziva?

Ziva: A White Paper is formal Government policy on a given subject such as learning disability, as opposed to a Green Paper which is a discussion or consultation document and a Bill or Act of Parliament. A White Paper has no force of law behind it and cannot, therefore, be enforced in the same way as an Act of Parliament such as the Autism Act 2009. The definition given in the White Paper is apparently the ‘definition of choice’ and can be found as such in many learning disability textbooks and is both concise and accurate. However, it lacks in its apparent objectivity and simplicity the possibility that learning disability is not a single condition, but a series of conditions. These conditions range from ‘Borderline’ learning disability through to ‘Profound’ learning disabilities via ‘Mild’, ‘Moderate’ and ‘Severe’ learning disabilities.

Hanif: Would I be right in thinking that the more severe the learning disability is, the more likely that such learning disability will include increasing physical disabilities such as cerebral palsy, musculoskeletal issues such as scoliosis, neurological conditions such as epilepsy and medical conditions such as respiratory and cardiac problems?

Ziva: Yes, you would. Again, although succinct and relatively easy to understand, it could be argued that this definition runs the risk of locating the disability within rather than outside the person. My brother Marcel is disabled and must learn to adapt to society, rather than Marcel having a disability imposed by societal attitudes and practices – attitudes and practices which prevent Marcel from fully engaging with society.

Hanif: OK. But where would one place those with Asperger’s syndrome or high-functioning autism in this learning disability range?

Ziva: Interesting question, Hanif. I must declare a personal interest here as I am Asperger’s. Few people would argue that ‘classic autism’ is not a form of learning disability, as it shares many of the cognitive issues and impairments of learning disability. However, do people such as Bill Gates (founder of Microsoft), Keith Joseph (British politician), Ludwig Wittgenstein (Austrian philosopher), Peter Sellers (British comedian) and Gary Numan (British electronic musician), all of whom are suggested to have Asperger’s syndrome, fit comfortably within a traditional learning disability framework? Probably not!

Hanif: Since those with Asperger’s tend to have higher than average IQs, given the names mentioned above (some of whom I know of), is Asperger’s an aspect of learning disability?

Ziva: Another interesting question and the jury is still out on this one! Anyway, the second definition is based on the opening section of the 1983 Mental Health Act and probably comes closest to providing a ‘legal definition’ of learning disability. However, this definition also applies to those with mental health issues and is not specific to learning disability. Again, the concept of ‘mind’ is introduced but, sadly, is not defined or developed. Having said that, this definition appears to be more ‘holistic’ in tone and acknowledges that learning disability is a spectrum of conditions.

Hanif: I mentioned a moment ago the idea of IQ and learning disability. Could you talk me through this connection?

Ziva: Although this definition is now seen as outmoded, learning disability has been defined in terms of intelligence quotient (IQ), a scale which was used to measure intellectual or mental ability. In general, IQ levels indicated that (Newcastle University, 2011):

People with an IQ level of:	Were classified as:
75 and above	‘Normal’
70 to 75	‘Borderline’ learning disability
60 to 70	‘Mild’ learning disability
50 to 60	‘Moderate’ learning disability
40 to 50	‘Severe’ learning disability
Less than 40	‘Profound’ learning disability

Hanif: I have heard that the general effectiveness of IQ ratings in indicating the level of a person’s learning disability is contested as being arbitrary, crude and inaccurate (New Scientist, 2009), and may not therefore be the best method of indicating learning disability.

Ziva: You are right about that, Hanif. I too have often struggled with this concept of IQ. However, another way of viewing learning disability is to see learning disability as a combination of intellectual and physical or health conditions (Garvey and Vincent, 2006). A practical example of this view could be those with Down’s syndrome, such as my brother Marcel, who are likely to experience difficulties in a number of different ways (Garvey and Vincent, 2006).

Hanif: OK, Ziva, I understand that. What are these different ways that you mention?

Ziva: These could include communication problems, a tendency to being overweight, problems with balance and mobility, painful joints and muscles, mental health issues, sensory issues, heart problems and respiratory problems. I know that this may appear to be a rather long list of health problems and there may be other health care issues that those with a learning disability may experience. However, it has to be said that not every person with a learning disability will experience all of these health issues. Again, caution must be applied here as many people who do not have a learning disability may also experience some or many of the health issues above, at some point in their lives.

PAUSE FOR THOUGHT 2.2

Now here is a question: How many people in the UK do you think are affected by learning disability?

Ziva: Hanif, you would be forgiven if you either plucked a figure randomly out of the air or said that you did not have a clue. If you said the latter, you are not alone: estimates of how many people experience learning disabilities vary. For example, in 2001 the Department of Health (DH) estimated that there were approximately 1.4 million people (out of a population of around 49 million) with a learning disability in England, of whom 210 000 had a severe disability (DH, 2001). If there are approximately 63 million people living in the UK (Office for National Statistics, 2011), the DH figures would suggest that there are currently almost 1.8 million people with learning disabilities across the four nations that make up the UK, of whom about 265 000 have a severe or profound and multiple learning disability (PMLD). Mencap (2011) suggests that there are currently about 1.5 million people who have a learning disability within the UK; that is around 2.5% (or 1 person in every 40) of the UK population, given a current UK population of 60 million.

Hanif: Is the wording in Pause for thought 2.2 a bit naughty? I spotted that the question asked how many people are affected by learning disability, not how many people have a learning disability. By asking how many people are affected by learning disability, the families, relatives, friends and even care professionals, each with their own expectations, needs and even agendas, must be included. Whilst there are between 1.5 and 1.8 million people in the UK with a learning disability, those affected by learning disability will be much higher.

BASIC HISTORY

PAUSE FOR THOUGHT 2.3

Student nurses today will, when they qualify, register as ‘Registered Nurse (learning disability)’. When I qualified as a learning disability nurse in 1989, my qualification was ‘Registered Nurse (mental handicap)’. My tutors’ and lecturers’ qualification was ‘Registered Nurse (mental subnormality)’.

Hanif: I notice that we have now moved on from understanding what learning disability means. Why is it important to look at the history of learning disability? After all, it is where we are now and where we are going that is important!

Ziva: I could not agree more, Hanif, but also I could not agree less! Unless you are aware of and understand the history of learning disability, how language has framed the definitions of learning disability and disability discourse, how such definitions and discourse and how those with a learning disability have been viewed have changed over time, then you may not be able to understand the present. If you cannot understand the present, there can be no future. To put this observation another way, those who do not have awareness and understanding of the past are condemned to repeat its mistakes! As can be seen from Pause for thought 2.3, the history of learning disability and those with a learning disability is bound intimately to language and its use. The lives of those with a learning disability and the ways that they have been treated by society in general, and health and social care professionals in particular, have changed for the better when the language that in part defines them has changed.

Hanif: Forgive my ignorance but is learning disability a recent condition? By that I mean how far back in history does learning disability go?

Ziva: Learning disability is not a recent condition by any means; it was likely that learning disability existed in biblical times. It may not have been inconceivable that learning disability, autism spectrum conditions and mental health conditions were considered to be examples of demon possession or a result of sin (Heuser, 2012; Romero, 2012). During the Middle Ages those with learning disabilities were either considered to be the ‘village idiot’ or due to their simplicity and naivety ‘God’s holy fools’ and either exalted or reviled, feared and hated. Many of those with a learning disability, an autism spectrum condition or a mental health issue would have been considered to be, and condemned as witches due to their behaviour. Again, those with a learning disability would likely have been left on the street to either barely survive through begging, to be ‘cared for’ by the Church or to die. From 1850–1910 (Gilbert, 2009) a more ‘formalised’ approach to care began to emerge which seemed to coincide with changes in social philosophy and policy. Those with a learning disability were seen as harmless but ‘sub-human’. The emphasis of service provision was on separation and segregation of those with either a learning disability or mental health issue from the rest of society. However, those with borderline or mild learning disabilities were considered fit for menial, largely rural, work.

Hanif: I am aware that the first half of the 20th century saw huge social upheaval. How did those with a learning disability fare?

Ziva: Well, it seems that the over-riding form of care was the ‘colony’ (Gilbert, 2009).

Hanif: Could you explain what you mean by the word ‘colony’?

Ziva: A ‘colony’ was a large mental subnormality/mental handicap hospital, usually situated in rural areas. Hospitals such as South Ockendon in Essex would have been colonies. The predominant social philosophy at the time would have been one of social and gender separation and eugenics, the gradual elimination of the weakest.

Hanif: OK, not much change then. How did this change, and indeed, did it change in the latter half of the century?

Ziva: The early 1970s saw a number of public enquiries into the standard of care in many of these large hospitals, including South Ockendon in Essex and Ely in Cardiff (Gilbert, 2009). Largely as a result of these public enquiries, better services for those with a learning disability were designed, those with a learning disability were seen as consumers of care and in the 1990s there appeared a growth in disability rights and equality. There was also the growth of small family-sized community homes reflecting the growth in community integration.

Hanif: So that brings us nearly to the start of the 21st century.

Ziva: Yes. The new century sees the continued growth in social inclusion, human and civil rights, citizenship and self-advocacy (Gilbert, 2009). ‘Mental handicap’ becomes ‘learning disability’. The old hospitals closed and care was (and is) provided in much smaller community-based homes. Many of those with a learning disability were encouraged to live semi-independently in their own homes with multi-agency support.

Hanif: I understand that there has also been some anti-discriminatory legislation during this time?

Ziva: Yes, Hanif. There was the Disability Discriminatory Act in 1995, the ‘Valuing People’ White Paper in 2001 and the Equality Act in 2010. All of these had an impact upon those with a learning disability and will be discussed further in Chapter 4.

WHAT IT MEANS TO HAVE A LEARNING DISABILITY

PAUSE FOR THOUGHT 2.4

Marcel has Down’s syndrome. Is he ‘learning disabled’ or does he have a ‘learning disability’? To put this question another way: is Marcel disabled or does he have a disability?

Ziva: This question may not be either as simple or as rhetorical as it may at first seem. After all, in the previous section one can see how the use of language such as ‘idiots’, ‘lunacy’, ‘mentally subnormal’, ‘mental handicap’ and ‘learning disability’ changed over time and helped frame how those with a learning disability were viewed and treated.

PAUSE FOR THOUGHT 2.5

A sign noticed in a church: ‘INVALID TOILET’. Does this mean that this toilet is in-valid, not/non-valid? Or does it mean that those who use it are somehow in-valid, not valid?

Ziva: In one way, we can never really understand and appreciate what it really means to my brother Marcel to have a learning disability as such meanings are often ‘value-laden’, subjective and personal to every person who has a disability. After all, it is often claimed by those on the autism spectrum such as me, for example, that if you meet one person with autism then you have met one person with autism! However, many are likely to experience discrimination, hate-motivated crime, infantilising attitudes, a lack of understanding and poor care on the part of some (but by no means all) care professionals. It could be suggested that one of the reasons for such experiences is the nature of the disability model that has been used in order to engage with those with a learning disability. There have been two main theoretical models that have sought to explain disability: the bio-medical model of disability and the social model of disability.

Bio-medical model (Hallawell, 2009)

 The person with a learning disability is seen, addressed and treated as a patient

 The role of the patient is to comply with medical, nursing and social ‘treatment’

 The focus is on the disability: the individual is considered to be disabled due to his or her impairment

 The person is defined by his or her disability

 The language around disability is one of negative terms, of deviance, lacking normality

 The disability prevents the person from fully engaging within society

 The person with disability has to change in order to fit into society.

Social model (Hallawell, 2009)

 Although originating in the mid-1970s, the social model came to prominence in the 1990s

 Has been described as being vaguely ‘Marxist’ in orientation

 Suggests that there is a difference between ‘impairment’ (such as sensory or physical impairment or learning disability) and ‘disability’

 Looks beyond the individual impairment or disability to examine the social, political, educational and environmental causes of disability

 It is society that causes and imposes disability on the individual due to its ignorance, stereotyping and the erection of structural, physical, environmental and attitudinal barriers that prevent full engagement, inclusion and participation of the individual with a disability or impairment within society

 A positive disability identity and a pride in having a disability develops out of a greater control by those with a disability of both their own lives and the services that are provided for them

 An aspect of this greater control by those with a disability is independent living supported with assistance when needed, rather than communal and dependent living.

CONCLUSION

Hanif has been exposed to a number of different meanings and perspectives of learning disability. As a result, he has acquired a basic understanding of what learning disability is. The meaning and understanding of learning disability is very much multi-dimensional in nature; differences in meaning and hence understanding arise from light being shone on learning disability from a variety of different angles, from a variety of different perspectives. Again, the meaning and understanding of learning disability has changed over time and will continue to do so. This is normal!

KEY POINTS

	There is no single definition of ‘learning disability’.
	The ways in which learning disability and its attendant health issues can affect a person are manifold.
	It is important to know a basic history of learning disability before the current situation can be understood and to prevent historical mistakes being repeated.
	There are different theoretical models of care, the main ones being ‘social’ and ‘bio-medical’.

REFERENCES

Barber, C. (2011) Understanding learning disabilities: an introduction. British Journal of Health Care Assistants, 05:04; 169–170.

British Dyslexia Association (2012) What are Specific Learning Difficulties? Available at: www.bdadyslexia.org.uk/about-dyslexia/schools-colleges-and-universities/what-are-specific-learning-difficulties.html (last accessed 16 October 2014)

Department of Health (DH) (2001) Valuing People: a new strategy for learning disabilities for the 21st Century. HMSO, London.

Garvey, F. & Vincent, J. (2006) The bio-physical aspects of learning disabilities. In Peate, I. & Fearns, D. (2006) Caring for People with Learning Disabilities. Chichester, Wiley.

Gilbert, T. (2009) From the workhouse to citizenship: four ages of learning disability. In Jukes, M. (ed.) (2009) Learning Disability Nursing Practice. London, Quay Books.

Hallawell, B. (2009) Challenges for the curriculum in learning disability nursing. In Jukes, M. (ed.) (2009) Learning Disability Nursing Practice. London, Quay Books.

Heuser, S. (2012) The human condition as seen from the cross: Luther and disability. In Brock, B. & Swinton, J. (2012) Disability in the Christian Tradition. Cambridge, Eerdmans.

Jukes, M. (ed.) (2009) Learning Disability Nursing Practice. London, Quay Books.

Mencap (2011) Shaping our Future: Mencap strategy 2011–2016. Available at: www.mencap.org.uk/sites/default/files/documents/Mencap%20Strategy%202011_2016.pdf (last accessed 16 October 2014)

Newcastle University (2011) Definition and Classification of Learning Disability. Available at: http://tinyurl.com/BJHCAlearning1 (last accessed 16 October 2014)

New Scientist (2009) A rational alternative to testing IQ (editorial). New Scientist, 2 November. Available at: http://tinyurl.com/BJHCAlearning3 (last accessed 16 October 2014)

Office for National Statistics (ONS) (2011) www.ons.gov.uk/ons/taxonomy/index.html?nscl=Population (last accessed 16 October 2014)

Romero, M. (2012) Aquinas on the corporis infirmitas: broken flesh and the grammar of grace. In Brock, B. & Swinton, J. (2012) Disability in the Christian Tradition. Cambridge, Eerdmans.