Booklet  Examining People with Learning Disabilities, Section One

Definition and History

The purpose of this article is to provide optometrists and other eye care providers with some background and advice on how to approach the examination of patients with learning disabilities.

In order for us to understand how the eye-care needs of people with learning disabilities differ from the rest of the population we need to understand what defines learning disability, its prevalence, and its causes. This section aims to describe these, along with some history of how people with learning disability have been cared for through the ages, to help understand our own prejudices and misunderstandings, as well as those of the wider society.

The first thing we need to establish is the definition of ‘learning disability’ in order to differentiate it from mental health problems and ‘specific learning difficulties’ such as dyslexia and dyspraxia. The definition used by Mencap is: “Learning Disability is a lifelong condition which results from damage to the brain before, during, or after birth, or from genetic or chromosome factors (like Down’s syndrome).” The injury or developmental anomaly which causes the learning disability usually has to happen either before birth or early in childhood, in order for the resulting condition to be defined as ‘learning disability’. A brain injury due to trauma or disease occurring after this time will not usually result in the same description of the resultant disability but if the injury occurs in the developmental period up to the mid teenage years then it may be so described. Ultimately, whatever the cause, learning disability should be perceived as a cognitive impairment making it harder to make sense of information. It is not mental illness (although due to a variety of factors mental illness is more prevalent in this group of patients). Most importantly for the eye care community the very factors causing the learning disability may also affect normal visual development and people with a learning disability are more likely to need but less likely to have access to high quality eye care.

The currently accepted terminology in the UK to describe this type of cognitive impairment is ‘learning disability’ although ‘mental retardation’ and ‘intellectual disability’ are still widely used in the U.S. and elsewhere. We should also remember to use the ‘person first’ approach when dealing with or discussing patients – they are ‘a person with a learning disability’ not ‘a learning disabled person’; or a ‘boy with Down’s syndrome’ not ‘a Down’s boy’. We should always try to remember to use the correct terminology when dealing with any patient, especially people in this group, as over the years inappropriate terminology has often become used abusively, further prejudicing society’s treatment of these people.

The history of individuals with learning disability predates written records and such disabilities are very likely to have been present since the beginning of man’s time on earth. In the past, people with learning disabilities have been perceived as objects of fascination and fear resulting in them being both worshipped and/or vilified. Even to the present day no society is immune to such perceptions, which lead to the development of myths, resulting in stereotyping, discrimination, mistreatment, and denial of opportunity for these individuals and this is a tremendous burden, not only for them but also for their families. We should note that most prejudice, whether related to disability, sexual orientation, race or religion tends to be caused by a lack of understanding and education about the person or persons being discriminated against and when a balanced view about that person or group has been obtained, then our prejudice tends to reduce or can be rationalized. It is the role of the practitioner dealing with this group of patients to put aside any preconceptions or prejudice and treat them first as people; people who may require more help, time, advice and expertise than others but who deserve no less professional care than any other patient.

In ancient times the care of people who did not meet the norms expected of society was sometimes harsh. In Sparta, a state council of inspectors would examine all neonates and those who were judged less than perfect specimens were thrown from the cliff top to their deaths.

Plato, 427-347BC wrote “then this is the kind of medical and judicial provision for which you legislate in your state. It will provide treatment for those citizens whose physical and psychological constitution is good; as for others, it will leave the unhealthy to die and those whose psychological constitution is incurably corrupt it will put to death.”

The treatment given to disabled individuals which could lead to their death was sometimes less deliberate but merely applying the rules of ‘survival of the fittest’ and through ill health, lack of self care, or neglect, the individuals would die from disease or malnutrition. In primitive society where food was scarce and the survival of the social group or tribe was a constant battle, then people with disabilities were less likely to prosper. With the development of stable settlements and increased food production, the ability to care for the less fortunate became possible. In these societies, particularly with the rise of organized religion, care for people with disabilities within the family group became the norm, although abandonment of infants with disabilities, infanticide and even slavery was still prevalent. During the 1600s in England, people who did not meet social norms were incarcerated in Poor Houses – an early form of institutional care – partly for their own protection and partly to ensure they did not destabilize the Establishment.

From the late 1600’s there was an increasing shift of populations in Europe from rural farming economies to those based on trade and production of materials in urban settings, accelerating in the mid 1700’s with the industrial revolution. The living conditions in these urban settings were often squalid and enforced labour was not uncommon. The situation for anyone unable to work because of age, ability or infirmity was desperate. The political response in Britain to these conditions was to pass The Poor Law Amendment Act (1834) and to build asylums and workhouses to house people described as ‘mad’ or ‘feeble minded’.

It was in the late 1600s that ideas about the difference between what we would now call mental illness and learning disabilities started to be formulated with John Locke stating that “Herein seems to lie the difference between idiots and madmen, that madmen put wrong ideas together and reason from them, but idiots make very few propositions and reason scarce at all”.

With the advent of educational systems and particularly when education was made compulsory in order to develop trained workforces, the care of people with learning disabilities changed considerably. Tests were developed to identify people who had learning disabilities. Sometimes these were very crude questions such as ‘how many feathers are there on a chicken?’ or ‘what is the difference between a stone and an egg?’ It was not until the early 1900s that the formal ‘IQ’ tests we know today were developed.

In the 1800s and early 1900s because it was considered that suitable training could ‘cure’ people’s learning disability, large rehabilitation and training institutions were developed to house and educate the ‘feeble minded’. These institutions quickly became overcrowded, their initial purpose forgotten, and so they developed into custodial living centres, segregating this group of people from the rest of society. The institutions were also unfortunately used as a convenient place to put people who were an embarrassment to society at the time, such as unmarried mothers, people with alcohol dependency and even some children who may have become dependent on the state due to being orphaned or abandoned. Some of these people lost the ability to live and think independently becoming ‘institutionalized’ over time and many developed secondary mental health problems.

At the same time that these large institutions were being developed, fears of overpopulation were being discussed in intellectual circles. From these discussions the idea of modelling the characteristics of populations developed - the so called ‘eugenics movement’. The idea was that encouragement should be given to intellectuals to procreate (positive eugenics) whereas undesirable elements in society such as the ‘feeble minded’ should be prevented from breeding (negative eugenics). Nazi Germany in the 1930s and 40s was probably the country who took this process to extremes, incarcerating people with disabilities in concentration camps and ‘special’ hospitals where they would be expected to die of malnutrition, disease or be sent to gas chambers and executed. More civilized countries such as the U.S. also introduced measures we would consider extreme today such as enforced sterilization to prevent ‘contamination of the gene pool’.

In Great Britain, the 1913 Mental Deficiency Act legalised the detention of ‘idiots, imbeciles, feeble-minded persons and moral defectives’ and in 1929 this policy was accelerated due to the findings of the Wood Committee recommending the immediate institutionalisation of 100,000 individuals.

Henry Stainsby, Chairman Birmingham Institution for the Blind (UK) said in 1908.

'I strongly am of the opinion that they should be protected and cared for by being placed in suitable residential institutions, which should be located in the country rather than in town. They should be kept under close supervision and control all their lives and on no account should they be allowed to marry and possibly transmit their own defects to the next generation. Separate institutions, several miles apart, should be provided for the males and females. Work and exercise in the open air should be plentiful and bathing frequent. The food should be simple, nourishing and abundant but non-stimulating and not taken to excess'.

This policy continued in the UK for many years, with the care of inmates varying greatly from one institution to another. In the late 1940s with the establishment of the NHS these institutions became hospitals and the health care needs of the ‘patients’ were addressed, but the regimes remained harsh and many children were still considered uneducable and no attempt at social integration was made.

In the UK from the 1950s, there was growing public unrest at the terrible conditions in the mental hospitals following the European Convention on Human Rights (1950) and a number of studies in the 1950s demonstrated the adverse effects institutionalisation could have on an individual culminating in the ‘Report of the Committee of Enquiry into Ely Hospital’ (Howe Report,1969). In 1971 the Government published a paper ‘Better Services for the Mentally Handicapped’, this paper laid the foundations for ‘Care in the Community’ with the expectation that half of the hospital population should be living in the community by 1991. Changes to the Mental Health Act 1959 ended compulsory certification of individuals with learning disabilities (intellectual disabilities), allowing many to be discharged from institutional care. It was not until the 1970s in the UK that changes were made recognising the education status of children with learning disability.

The 1970 Education Act reclassified approximately 70,000 children as educable and shifted the responsibility for education from health to the education departments of local government and in 1981 a further Education Act made provision for all children to be educated, removing the title uneducable and also involving parents for the first time in decisions regarding their children’s education.

We can see from this brief history that many people who have learning disabilities today will have been influenced either directly or indirectly by care pathways and legislation of the past. Sometimes it will be that they lived in one of the residential care settings described above; they may have been denied educational opportunities due to legislation; or they may have been cared for by someone who was trained within the ‘old system’.

These factors may still influence their behaviour, such as mistrust of strangers, fear of being touched and of any procedure they perceive as ‘medical’. Care settings may also differ widely in approach and although in the past ten years these have become more homogenous, there may still be some following very much a ‘medical model’ similar to the older institutions and others with a more contemporary ‘social model’ embracing all of the ideals of ‘care in the community’.

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