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