Prior to the Industrial Revolution, people with learning disabilities are thought to have been cared for by their families, rather than by the State. McCarthy (1999) points out that it was not uncommon for a parish to have a ‘village idiot’ as an accepted member of the community. Many earned a living off the land, or within the home, where they could be supervised by their relatives.
At that time, the learning disabled were only considered a matter of public concern when care broke down. Rushton (2005, p. 60) argues that, in effect, the family was ‘at the centre of the state-enforced system of care’.
However, with industrialisation and the rural-urban migration of the 1800’s came an emphasis on individual prowess and productivity. Attitudes towards the learning disabled changed and they were increasingly regarded as a burden to the family. Gradually the responsibility for care moved from the family to the State (Swain, French and Cameron, 2005). This gave rise to the beginnings of institutionalisation for people with learning disabilities.
In 1834, the Poor Law (Digby, 2005) stated that care for the learning disabled should be provided by the workhouses. These soon gave way to the asylums, institutions that housed the mentally unwell, deaf, physically disabled, learning disabled and morally defective (those lacking in moral judgement, be that of a criminal, social or sexual nature).
These institutions became repositories for the unwanted, the uncared for and the dangerous.
Caine, Hatton and Emerson (1998) describe how, during the late 1800’s and early 1900’s, the number of people with learning disabilities admitted to these asylums steadily rose.
26
There appear to have been several factors which contributed to this trend:
The influential medical model began to conceptualise ‘idiocy’ as an organic disease, recovery from which was not anticipated, but which medication could control. People with learning disabilities were perceived as qualitatively different to the rest of the population and, in some respects, less than human (Caine et al., 1998).
By the early 1900’s the Eugenics philosophy exerted a strong influence over Western society. Caine et al. (1998, p. 57) point out its claims that ‘social ills, such as poverty, crime and immoral sexual behaviour were caused by people of inferior genetic stock’. The Eugenics movement also argued that such traits were heritable; so those with inferior genes should not be allowed to procreate. The learning disabled woman represented a specific threat to society, as she was thought to be the biological source of the perpetuation of cognitive deficiency (Simmons, 1978).
The influence of Eugenics led psychologists to develop the concept of intelligence testing. Hendrick (1993) explains how this ‘scientific’ method enabled the classification of the mentally deficient at an early age: increasing numbers of children were placed in institutions.
McCarthy (1999) points out that, during the early 1900’s, many learning disabled women were sterilised in the United Kingdom. In America, such practices were taken even further. Digby (2005) reports that between 1900 and 1940, sixteen different states within America passed a law for the mandatory sterilisation of those deemed biologically inferior.
At the end of the Second World War, public opinion turned against involuntary sterilisation, in both the United Kingdom and the United States.
This was in no small part influenced by the atrocities of the Nazi Regime in Germany, which cast a dark shadow over the Eugenics movement; one that ultimately
27
contributed to a paradigm shift in society’s perception of the vulnerable. In the United Kingdom, involuntary sterilisation subsequently became a matter for judicial review.
This shift in public opinion coincided with the launch of the NHS in 1948. The care of people with learning disabilities was transferred to the NHS, who began to be seen as patients with health problems, rather than incurable souls that required
management. The asylums became long-stay hospitals.
This shift was quickly modified further by the pioneering work of social scientists such as Goffman (1961). Goffman’s work on the stigmatising and handicapping effects of institutions contributed to the view that the long-stay hospitals were not the answer. Indeed, they quickly came to be seen as a contributory factor in
discrimination towards the learning disabled (Digby, 2005).
Goffman’s observations were reflected in a number of scandals that came to light in the long-stay hospitals at that time: most notably, the Ely Hospital in Cardiff in 1969 and South Ockendon Hospital in London in 1974. Investigations into practice in these hospitals revealed widespread institutional abuse of people with learning disabilities by the staff charged with their care (Digby, 2005).
Legislation of the period reflected the changing mood. The White Paper Better
Services for the Mentally Handicapped (Department of Health and Social Security,
1971) stated that long-stay hospital accommodation should be halved within fifteen years. As an alternative, it requested that local authorities establish parallel
community-based services for the learning disabled.
There followed a large scale review of services across the United Kingdom over the course of the 1970’s (Leighton, 1988; Lowe, 1993), heavily influenced by the work of academics such as Wolfensberger (1972).
Much of Wolfensberger’s (1972) work was focused on the ideologies, structures and planning patterns of human service systems, particularly concerning people with learning disabilities. He aimed to address their social devaluation by contemporary
28
society and argued that they be afforded the same opportunities in life as the mainstream population.
Wolfensberger's work became the cornerstone of the ‘normalisation movement’. Thomas and Woods (2006) cite Wolfensberger (1977, p.471) in describing the principle of normalisation as ‘the utilization of culturally valued means in order to establish and/or maintain personal behaviours, experiences and characteristics that are culturally normative or valued’.
Normalisation exerted considerable influence over the philosophy and structure of service provision to people with learning disabilities, from the 1970’s onwards. The 1980’s brought an increasing focus on community-based care in the United Kingdom. The Care in the Community Initiative (Department of Health and Social Security, 1981) furthered the 1971 requests of Better Services for the Mentally
Handicapped. It required that resources be transferred from the NHS long-stay
hospitals to local authorities, insisting that residents move into community settings. The government White Paper Valuing People (Department of Health, 2001) has further supported the rights of people with learning disabilities to the same life opportunities as the rest of the population: it states that statutory services have a responsibility to consider appropriate housing, leisure opportunities, day centres, health care, education and (where possible) employment for people with learning disabilities. It also advocates the right to have children, and a normal family life. Despite these steps towards inclusion in mainstream society, Valuing People
(Department of Health, 2001) points out that people with learning disabilities remain amongst the poor, most socially excluded within Britain today. As such, those who chose to become parents hold a significantly disadvantaged social status.
The next section turns to the current legislation in the United Kingdom, which
governs the nature of service provision to parents with learning disabilities. However, it seems there are a number of complex difficulties which compromise the quality of services parents receive.
29