The discipline of learning disabilities nursing has seen scant attempt to explore the concepts underpinning its approach to care. Most recent attempts to do this have focused on the application of concepts identified within other disciplines of the profession, most notably general nursing, which are a product of conceptual analyses within those areas (Duff 1997; Mason and Patterson 1990). In my opinion, attempts to explicate these concepts and to explore the learning disabilities ‘nursing model’ are futile without first examining the context within which nursing has developed, for the attitudinal contexts which have embued the concept of ‘care’ in learning disabilities may be argued to be those that have underpinned an unspoken, unexplored model of nursing throughout its long history.
This essay seeks to set out the context within which nursing and caring have developed, and to initiate a debate on the essential role that nursing in learning disabilities may play in the services of the future. In keeping with Cicero’s sentiments, quoted above, I will explore the history and development of societal attitudes towards people with learning disabilities throughout the ages. The role of the industrial and scientific revolutions in the identification of ‘disability’ as being the central concept for people who were so labelled will then be addressed. Finally, I will examine the development of learning disabilities nursing under the medical model. The implications of this model and the perceived need for an alternative approach will be discussed in a future article.
The reality of prejudice exists in all strata of society, and is grounded in over-generalised, learned attitudes towards individuals who do not conform to what is perceived to be normal by those who have power in that society (Dworetzky 1991), resulting in stereotyping of individuals on the basis of deviancy in behaviour, appearance and beliefs, etc. It may further manifest itself in them being treated unequally, solely on account of their membership of that ‘deviant’ group. This experience of inequality has been reported by the many disabled individuals who made submissions to the Commission on the Status of People with Disabilities (1996), who reported that they ‘were being either kept at, or pushed to, the margins of society…not being allowed to realise their potential or to participate as fully as they are entitled to in everyday life’ (p. 5). Persons with learning disabilities have shared this experience of marginalisation, as I have written elsewhere (Sheerin 1998).
The attitudes underpinning such prejudice and marginalisation are grounded in societal perceptions developed throughout history, and those attitudes have contributed to the development of values and beliefs inherent in the model of nursing in the field of learning disabilities.
The ancient world
Although there are diverse accounts regarding the manner in which deformity and disability was managed in the ancient world, it appears that the most frequent solution was euthanasia—either at birth or later. This may have been carried out for religious reasons (the Babylonians of 2000 BC used handicapped persons as sacrificial victims in ceremonies), social reasons (when a child with a disability represented a potential stigmatising force for the family), and/or economic reasons (where the disabled child would place undue strain upon the resources of the family) (Dolan et al. 1983). Hooker (1996) reports that ‘Exposing weak or sickly children was a common practice in the Greek world’, being decided upon and carried out ‘as a domestic activity’. In contrast, Spartan society was so organised that it was the state that ‘decided whether children, both male and female, were strong when they were born. Weakling infants were left in the hills to die of exposure’ (ibid. 1996). Thus the decision was, to some degree, based upon a societal perception of the usefulness or worth of an individual to that society.
The Celts are reported to have addressed the issue of disability in a somewhat more positive manner (Wentz 1911). One theory of Celtic mythology reasoned that the sídhe (fairies) left disabled children in place of the real, healthy children. The former were understood to be ‘changelings’, the product of demonic possession by evil sídhe, and they were protected and kept as part of the family in the hope that the druids would be able to facilitate the return of the healthy children. It was believed that if the ‘changeling’ were harmed, similar harm would be done to the real child. It is interesting that in this country, which is reputed to demonstrate a significant Celtic character, there have been continued efforts to protect and ‘care for’ people with disability. This is evident from the fact that, whereas many other civilisations killed their disabled members during times of hardship and famine, such people were largely supported within Irish society throughout such periods, and even during the Great Famine (The Illustrated London News 1843).
The principal writings of the Judaic and Judaeo-Christian faiths reveal further diversity in approaches to those who might now be considered to be learning disabled. Notably, the Bible makes many references to mental disease as being related to demonic possession—a view that was to reappear around the time of the Reformation. On the other hand, the Talmud, which dates from the third to the fifth century, considers mental disease to be a medical condition amenable to treatment. This may account, to some degree, for Gilbert’s (1985) finding that in the Judaic world people with learning disabilities were often thought of as gifts from God, and were consequently treated with kindness.
It is evident from the above that, since distant pre-Christian times, the person with learning disability was viewed from a variety of perspectives. It must be noted, however, that a common strand of negativity appears to run through many of those perspectives, either related to, or resulting in, prejudicial attitudes.
The Middle Ages
In the Middle Ages, to the ongoing efforts to understand the origins of humanity led some individuals to attempt to classify the variety of manifestations of disease, including those of mental disease. Thus Avicenna (980-1037), the Islamic philosopher-scientist, described ten types of mental disorder, one of which was ‘amentia’—a state characterised by defects of memory and imagination (which may have coincided partly with what we now call learning disability). Some five centuries later, Felix Plater (1535-1614) devised a four-part classification which appears to identify learning disability as ‘mentis imbecilitas’ or mental weakness, noting that those described did not possess discipline, were stubborn and could not learn. This approach to mental disorder, whilst not representing any overt sense of negativity towards sufferers, is hugely important, for it marked the first efforts at categorising and classifying mental disease, a process that was to become the basis for addressing all disease and ‘abnormality’ under a medical model of care.
While the above events fall largely within the medico-scientific realm, it is important to be aware of the societal context that existed in the Middle Ages, for it was within this wider context that societal attitudes developed. Before the Industrial Revolution, societies had been principally agrarian in nature, although there were some centres of trade and manufacture. States were typically large and were governed by kings or emperors (Giddens 1997), with a simple form of social stratification which divided the aristocratic groups from the rest of the populace. Education, too, was principally for the aristocracy, with most of the peasantry being unable either to read or write (Giddens 1997; Whelan 1995). In the context of a pre-industrial society, where the emphasis was on work rather than on education, a learning disability was not a visible one. It is likely that multiply handicapped children did not even survive pregnancy, and if they did there was no health system in place to support their lives (Worsley 1992). Thus those learning disabled people who did survive probably had, in present terms, mild to moderate degrees of disability, with little physical incapacitation. This supposition is supported by Plater’s classification of mental disease, identifying learning disability, at that time, solely in terms of mental weakness.
In the late fourteenth century major changes were made in the management of people with mental disorders, in a movement described by Foucault (1961) as the onset of ‘confinement’. It also marked the beginnings of segregation. This differed from the nineteenth-century movement which was grounded in scientific or medical endeavour. The earlier movement was an attempt to apply reasoned order on the state of disorder observed in people with mental disease.
This movement developed across countries, and across secular and religious divides. Christian churches of that time, both Roman Catholic and Reformed, explicitly or implicitly supported confinement and custodialism. This factor may be important within the Irish context, for many of the learning disability institutions and hospitals in this country were initiated by religious congregations that were active or in their infancy at that time. They may have been influential in the development of the beliefs and attitudes that underpin current models of nursing care in learning disability.
A number of historical figures of this period were noteworthy in their contribution to the development of societal attitudes towards persons with learning disability. Martin Luther, as a religious fundamentalist, interpreted mental disorder to be caused by demonic possession. Indeed, he is quoted as holding that ‘as for the demented…all beings deprived of reason are thus afflicted…by the Devil’, and that ‘the Devil, too, sometimes steals human children; it is not infrequent for him to carry away infants within the first six weeks after birth, and to substitute in their place imps…’ (Morgan, no date). Others, such as Vincent de Paul, showed a more understanding approach to those with learning disabilities, although he supported the state-led movement of detaining such people in confinement, at the king’s order. The then pope, Innocent VIII, played an indirect part in adding to the increasingly negative image of people with learning disabilities and/or mental illness, through his release of the papal bull Summis desiderantes, which gave blessing to the practice of witch-hunting, an activity that was to have dire consequences for many such people.
The Industrial Revolution
With the Industrial Revolution came the growth of cities and an increased demand for educated and trained individuals (Giddens 1997). Educational developments enacted to meet this demand created a context for the identification of those people who could not learn (Brandon 1957). This was one factor that highlighted the existence of learning disabled people in industrialised society, emphasising their difference and disability. As a consequence of their apparent ineducability, and perceived lack of potential with regard to productivity, persons with learning disability formed an increasingly large portion of the underclass, and they gravitated towards the Poor Law institutions (Rafter 1992). This further singled out the learning disabled as a problematic group.
The Scientific Revolution
Developments in scientific knowledge in the nineteenth century compounded the problems of persons with learning disabilities. These specifically related to advances in the understanding of genetics and evolution, and their impact upon societal thought. Theories proposed by Mendel and Darwin challenged the long-held social beliefs previously led by philosophers and theologians (Worsley 1992), and as these new theories became more widely accepted, assumptions were made regarding those who were seen to be unfit or deviant in society. Eugenicists held that the children of parents with a learning disability would always be disabled themselves, that ‘feeblemindedness…behaves as a Mendelian recessive’ (Downing 1931, quoted in Brandon 1957, 711). Allied to this was the negative eugenic stance that the ‘unfit’ should be prevented from reproducing lest their procreation would lead to a preponderance of learning disabled persons in society, ultimately threatening social security (Rafter 1992). These ideas, which were clearly based on Darwin’s Theory of natural selection, were represented by the deeply held belief that ‘all poor, feebleminded women at large become mothers of illegitimate (feebleminded) children soon after reaching the age of puberty’ (Neff et al. 1915, quoted in Brandon 1957, p.711), and that the multiplication of the ‘unfit’ threatened humanity with ‘economic and biological disaster’ (Tredgold 1929, quoted in Brandon 1957, 711).
As a consequence of these beliefs and in order to prevent the perceived threat to society, the eugenicists focused their attention on a specific group: poor, learning disabled women of childbearing age. Indeed, Rafter (1992) argues that the eugenics movement in the United States, under the leadership of Josephine Lowell, actually criminalised the state of being female and learning disabled; the Newark Custodial Asylum stated that the uncontrolled female body was ‘immoral, diseased, irrational, mindless’ (Rafter 1992, 25). Segregation was chosen in the form of prophylactic institutionalisation which not only removed the learning disabled women from society but also denied them the possibility of having a reproductive future. Sexual controls were subsequently imposed on learning disabled men (Rafter 1992).
This all served to uphold and further the stigmatism and prejudice that had existed towards people with learning disability, but whereas the confinement movement of the 1500s had removed them to institutions on the basis of custodialism, this new institutionalisation provided the basis for the growth of a medical paradigm of care centred on these people as disabled, abnormal and unfit.
Regularisation of medicine
The late eighteenth and early nineteenth centuries saw the organisation of a male-dominated medical profession, practising what was considered to be ‘regular’ medicine. Women, who had been healers across cultures from the earliest times, found themselves, as midwives, healers and nurses, distanced from the mainstream of medicine on account of their ‘irregular’ and seemingly unsound methods which had no foundation in hard science. Ironically, their methods had served societies for centuries.
Thus grew the image of the medicine-man practising heroic medicine, such as blood-letting and purging, and addressing illness from the newly described positivistic perspective which put its faith in empirics and science. Within this context, all other forms of knowledge were seen to be inferior and invalid. As the social acceptance of science grew, so also did the profile of the physician—to the detriment of the nurse (Ehrenreich and English 1973).
This development was also to have a profound implication for people with mental disorders, with the Lunatics Act of 1845 being central to the application of scientific methodologies to them. This act provided for the confinement of such people in large institutions, for the purpose of medical intervention (Chung and Nolan 1994). The eugenic identification of these people as being unfit and abnormal placed them within the focus of the medical profession, and as the Poor Law workhouses began to be increasingly populated by people with mental disorders and disabilities, these too eventually were placed under the governance of physicians (Finnane 1981). Armed with the belief that science could predict and control, they set about applying their heroic treatments.