Changing attitudes

The day-to-day lives of people with a learning disability and their families have always been affected by the way they are viewed and treated by the communities they live in. Sadly, the history of public and private attitudes to learning disability over the last three centuries has been one of intolerance and lack of understanding. The right to freedom from discrimination for people with disabilities, including those with a learning disability, has been enshrined in the Disability Discrimination Act 1995, but there is still much to be done to change public attitudes.

An age of innocence?

Little is written about the lives of people with a learning disability before the 18th century. Everyday life in Britain before the industrial revolution was mostly centred in rural farming communities, and although there are references to 'village idiots', they represent only a small minority of the people we would describe today as having a learning disability.
There are several reasons for this. Children with profound physical disabilities would have been unlikely to survive beyond early infancy, and at this time families lived in more closely-knit communities, often staying in the same village for most of their lives. Also, literacy was less in demand than labouring skills, so mild learning disabilities could easily go unnoticed.

This is not to say that people with a learning disability did not face discrimination. Being described as an 'idiot' brought with it notions of being the 'holy innocent' at one extreme, or the product of some unnatural or demonic relationship at the other. In a time when there was little public health or educational support, people with disabilities would not have had much help outside their families.

The Poor Laws and the asylums

The industrial revolution led to mass migration to cities, and the way communities lived changed radically. Most people lived in squalid conditions, and some had to face enforced labour. The situation was desperate for anyone unable to work because of age or infirmity.

The political response to these social pressures was the creation of the Poor Laws in 1834 and the building of 'asylums' - purpose-built institutions to house people described as 'mad' or 'feeble minded'. The idea behind the asylums had some merit. They were often developed by the radical free thinkers of the day and were a genuine attempt to improve conditions for their residents. Asylums were often built in idyllic settings, they were light and clean, and often a great improvement on the common living conditions of the time.

But this early promise was not sustained. The asylums were often harsh and authoritarian places where the 'inmates' had little choice and were not valued as people. The asylums became overcrowded, and conditions worsened as attitudes changed and the residents began to be regarded to be dangerous and a drain on society, as well as a source of 'contamination of the national gene pool'.

Into the 20th century

The development of institutions continued into the early 20th century, though the purpose of moving people to institutions changed. Reforming educationalists got laws passed that encouraged the building of schools for 'feeble minded' children, and in 1908 the Radner Commission stated that: ‘Feeble-mindedness is largely inherited.' They suggested that such people were genetically inferior and needed to be segregated from the rest of society.

The Mental Deficiency Act of 1913 stated that anyone admitted to an institution had to be certified as a ‘mental defective'. The institutions were now renamed 'colonies', and their purpose was to separate their residents from society. In 1929, the Wood Committee suggested that such people were a threat to society:

"Let us assume that we could separate all the families containing mental defectives... this would include a higher proportion of insane persons, epileptics, paupers, criminals, habitual slum dwellers... If we are to prevent the racial disaster of mental deficiency... we must deal with... the whole sub normal group."

During the periods between the two world wars, the numbers of people admitted to institutions rose. Laws were passed to further segregate all ‘defectives' and their families from mainstream society. Proposals were introduced to round up and separate all families of ‘feeble minded people', including ‘insane, epileptics, drunks and musicians', to name but a few.

It was suggested that such people would 'take over' and 'infect' others and that a 'racial disaster' would ensue. Cyril Birt was a member of the Eugenics' Society, a group that believed there was a problem of 'degeneracy' in society and that there was a need to separate them, keeping men and women apart so they would not procreate. History shows that the theories of eugenics have justified many atrocities committed against people with a learning disability and the mentally ill, as well as the millions of victims of the Holocaust.

Fortunately, this country drew back from such unthinkable measures. However, this ideology continued to affect the huge numbers of people admitted to institutions right up until the late 1980s. In the 1930s, the IQ test was introduced - people scoring low on the test were categorised as 'mentally defective' and ineducable.

The introduction of the National Health Service in 1946 and the development of the medical model of disability had an impact. The term 'mentally handicapped' came into use, and the 'institutions' turned overnight into hospitals, with the emphasis now on caring for their residents. Society had moved from seeing the 'mentally handicapped' as dangerous and degenerate to viewing them more sympathetically, as people in need of treatment, although still a drain on the public purse. People with a learning disability remained segregated and isolated, and the standard of care was extremely poor. This remained the case right up until the closure of the long-stay hospitals.

One resident said:
"Being in the institution was bad. I got tied up and locked up. I didn't have any clothes of my own, and no privacy. We got beat up at times but that wasn't the worst. The real pain came from being a group. I was never a person. I was part of a group to eat, sleep and everything... it was sad."

In 1959, the Mental Health Act began the idea that some people might not need to be cared for in a hospital. It was also the first time that people with a 'mental illness' were distinguished from those described as having a 'mental handicap'.

In 1967, national newspapers started to draw attention to the scandalous conditions in 'mental handicap' hospitals, for example, in the South Ockendon Hospital Enquiry and the Ely Hospital Report. In 1971, the Government published a paper, 'Better services for the Mentally Handicapped', in response to continued reports about appalling conditions in the hospitals. This paper laid the foundations for 'Care in the Community', with the expectation that half of the people in hospitals should be living in the local community by 1990.

However, despite these government intentions, services continued to be poor. Research into hospitals and other newer forms of residential care published in 1978 identified many failings, including ‘Under-staffing, inadequate resources, poor standards of hygiene, lack of specialist services... [and] extreme social isolation.'

‘Normalisation'

The concept of 'normalisation' began to influence the delivery of care for people with a learning disability during the 1980s. Normalisation theory emphasises the unique value of the individual, their right to choice and opportunity, and the right to any extra support they need to fulfil their potential. At this time there was also recognition that institutions were a major barrier to inclusion.

The idea that everyone in society has the right to a life with choice, opportunity and respect, with extra support according to their needs, helped to change the way services were planned and delivered. The National Health Service and Community Care Act 1990 recognised the right of disabled people to be an equal part of society, with access to the necessary support.

The present day

We might like to believe that the task of de-institutionalising the care of people with a learning disability is now complete. Nearly all the long-stay hospitals are now closed, and many rights are enshrined in the Disability Discrimination Act.

However, the reality is that many people are still denied the things that most people take for granted, such as a decent income, somewhere appropriate to live, the chance to work, leisure opportunities and choices in education.

Today's services aim to enable people and promote equal treatment and inclusion. This brings with it new challenges and responsibilities, the greatest of which is to change public attitudes towards people with a learning disability and raise understanding.