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
