February 11th

Bev’s MA February 19th 2014 References

Carr, E.H. 1949. Dostoevsky: 1821 – 1881. London: George Allen and Unwin.

Dostoevsky, F. [1860] 1950. The House of the Dead. (Trans. Constance Garnett) London: William Heinemann Ltd.

Douglas, M. 1966. Purity and Danger: an analysis of concepts of pollution and taboo. London: Routledge and Kegan Paul.

Goffman, E. 1961. Asylums: essays on the social situation of mental patients and other inmates. London: Penguin Books.

Goode, D. 1994. A World Without Words: the social construction of children born deaf and blind. Philadelphia: Temple University Press.

Hubert, J. 1991. Home-bound: crisis in the care of young people with severe learning difficulties: a story of twenty families. London: King’s Fund.

Jodelet, D. 1991. Madness and Social Representations: living with the mad in one French community. California: University of California Press.

Johnson, K. 1998. Deinstitutionalizing Women: an ethnographic study of institutional closure. Cambridge: Cambridge University Press.

Kennedy, F. 1942. The problem of social control of the congenital defective - education, sterilization, euthanasia. American Journal of Psychiatry 99, 13-16.

Kourdoutis, P., G. Kolaitis, A. Perakis, P. Papanikolopoulou and J. Tsiantis 1995. Change in care staff’s attitudes towards people with learning disabilities following intervention at the Leros PIKPA asylum. British Journal of Psychiatry - Supplement, 56-69.

Ryan, J. and F. Thomas 1987. The Politics of Mental Handicap. London: Free Association Books.

Shepherd, G., M. Muijen, R. Dean and M. Cooney 1996. Residential care in hospital and in the community - quality of care and quality of life. British Journal of Psychiatry 168, 448-56.

Sinason, V. 1992. Mental Handicap and the Human Condition. London: Free Association Books.

Sinson, J.C. 1993. Group Homes and Community Integration of Developmentally Disabled People: micro-institutionalisation? London: Jessica Kingsley Publishers.

Tsiantis, J., P. Kourdoutis, G. Kolaitis, A. Perakis and H. Assimopoulos 1995. The psychosocial dynamics of change at Leros PIKPA asylum. British Journal of Psychiatry - Supplement 46-55.

Young, I.M. 1990. Justice and the Politics of Difference. Princeton: Princeton University Press.

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Kennedy, F. 1942. The problem of social control of the congenital defective - education, sterilization, euthanasia. American Journal of Psychiatry 99, 13-16.

In the research described in Chapter 7, with families who have a son or daughter with severe or profound intellectual disabilities and challenging behaviour living at home, their perceptions of people who had moved out of the old institutions was still very negative.

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It can be hard to separate out concepts of pollution from a natural reluctance to be covered in, and carry the smell of other people’s bodily waste. The locked men’s ward described in Chapter 4 was dominated by the smell of urine, faeces, disinfectant and drug-laden breath. It was inevitable that contact with the men, and with their physical environment, would result in one’s own hands, at the very least, smelling of bodily excretions. But the sense of pollution and uncleanness that seemed to be held by people who worked within the ward, and by those outside it, was not limited to these tangible, physical things. The men were defined, as Young wrote (above), in terms of these bodily characteristics, ‘as ugly, dirty, defiled, impure, contaminated or sick’ (Young 1990: 123).

However much one believes oneself to be without prejudice, it is hard, deep down, to be sure that one is totally free from these concepts of pollution and contamination:

When I come out of the ward I usually wash my hands. I do it to get rid of the smell of faeces. I am entitled to do that because some of the men manually evacuate their bowels and spread faeces over themselves and on the furniture and the walls with their hands. But sometimes I wonder whether that is the only reason I wash my hands. Can I be sure, in spite of what I want to believe I feel, that I am not actually afraid of being contaminated at some deeper level and so ritually cleansing myself of the institution, before I enter the outside world? (JH fieldnotes).

This chapter briefly describes an ethnographic research project carried out with a group of people who are among the most vulnerable in our society - 20 men who lived in a locked ward of an old ‘mental handicap’ hospital. All of them had severe intellectual disabilities and mental health problems, and almost all of them had lived in an institution since the age of eight or younger. When they were first admitted to a children’s hospital they were often described simply as youngsters who were hard to manage, others were institutionalised simply because their mother had been unwell and then had not taken their child back. Now, after 30 or 40 years of living in a closed ward, these children fulfil the popular stereotype of ‘mad’ people - they fling themselves at the floor and walls, bang their heads, roar and screech, and tear off their clothes. Some injure themselves or attack others in the ward, and anyone else who comes in from outside. Others pace or run almost continuously around the huge bare rooms, or crouch alone against the walls, watching.

The research used ethnographic methods. I set out to try to experience and understand the culture of the ward from within it, i.e. from the point of view of the people who

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lived in it. Ideally, of course, I would have lived on the ward, actually become a

resident, but living with the twenty men on the locked ward was not considered to be a viable option. Instead I spent c. 300 hours of participant observation with the men for almost three years, at all times of the day and night, getting to know them, how they communicated, and the nature of their experiences. In other words, the study attempted to discover who they were, as opposed to the institutional ways in which they were usually described, i.e. in terms of the severity of their disabilities, their challenging behaviour, and their physical and suggested sexual dangerousness.

The aim was to get to know them, to find out what their relationships were, to absorb the ethos of the ward, and to try to discover - from people who mostly cannot express themselves in speech - what their experiences, hopes and fears might be.

I hoped that it would be possible, to some extent at least, to retrieve and restore their individual identities, lost over the years of institutionalisation, through an understanding, however incomplete, of their individual experiences.

Because the men could not speak (some spoke a few words), other people who had contact with them, mainly care staff and the occasional doctor, seemed to assume that they were essentially unknowable beyond the superficial sum of their impairments, basic needs and challenging behaviour. There was little acknowledgement of their human qualities, and little evidence, except in very few cases, that staff had tried to build up meaningful reciprocal relationships with them as individuals.

Because they had little or no speech, and thus could not present their own pasts, their identities were constructions by others who had come briefly in and out of their lives. Their personal histories were lost, and had been replaced by other people’s records, made for other people’s purposes. They were not perceived or represented as full social beings in their own right.

Given Dostoevsky’s observations about men detained in political prisons, it is not surprising, perhaps, that the men in this ward, locked away as small children, became restless and miserable, even, perhaps, ‘haters of mankind’, giving voice to wild, involuntary utterances, and becoming ‘monsters in their misery’.

The lives of the men in the ward consisted of almost total social and physical exclusion, and there was little if any stimulation and activity. There was disregard of the men’s constant attempts to communicate, a lack of physical care, and no attention paid to their mental health problems and emotional suffering. They lived bleak, routine-led lives in the context of extreme physical and emotional deprivation, and practices that were in many ways abusive.

These separate lives, and the treatment that these individuals have received over the years, have resulted not only in loss of individual identity, but also social identity, because they had no visibility in the community beyond the hospital.

Most had also lost their familial identity, their last contact with any members of the family being many years ago, but through getting to know the men as individuals it became clear that they continued to remember their families, and their place within them, and wanted to still be part of a family - to feel that they ‘belong’. The men were known to have suffered abuse of many kinds. This is not only because they were unable to report what other people did to them, but also because others often saw them as being

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quite different from themselves, without their own feelings and needs, and hence they were seen by some as 'acceptable' victims. Once people are thought of in this way they are no longer seen as full human being, and it seems that other people then feel free to disregard, or deny the existence of thoughts, emotions, hopes and fears, and even of pain.

It was obviously easier for many people not to understand, not to perceive the men as social beings, so that it continued to be possible to treat them as negligently as they did. In addition, this almost total segregation from the outside world meant that the institutional culture that had persisted for so many years could continue to be condoned, and changes need not be made, because no one outside really knew, or cared, about what happened from day to day.

**The inhuman levels of treatment of the men in the locked ward had inevitable adverse effects on them. Since childhood they had been labelled as having challenging behaviour, and there is little evidence that this had ever been dealt with except through the use of psychotropic medication. Most of them were also labelled as being sexually abusive, whether they were or not, thereby making them even more of outcasts than they already were. Their status as victims of abuse themselves was rarely acknowledged.

The threat, however misconceived, of potentially uncontrollable sexual activity, among people who are perceived as almost totally ‘other’, inevitably leads to further rejection and social exclusion. The dehumanizing process of people living segregated lives in institutions pervades all aspects of their selfhood, and by so doing propels them further and further into psychological and social states that are perceived negatively by others. Over the years not only had their stereotypical behaviour and challenging behaviour intensified, but there had also been a corresponding loss of individual and social skills and, perhaps most sadly of all, they had lost the ability to speak.

The men’s medical records show that many of them were admitted to the hospital simply as difficult to manage children with intellectual disabilities, but after more than 30 years of life in a closed institution they had all developed severely challenging behaviour, and now appeared to fulfil the popular stereotype of Bedlam, of ‘mad’ people in institutions.

The perception of them as men was largely one of dangerousness, both physical and sexual. There was little acknowledgement of their individual desires, needs, hopes and fears as adult men. Their challenging behaviour defined the way they were perceived, and thus how they were treated.

The men had become socially invisible; they no longer had a place in the wider social system, they were left out of what Mary Douglas called ‘the patterning of society’. Their social identities were lost, resulting in extreme vulnerability to the actions and decisions of the constantly changing managers and care staff who were responsible for them in their closed world.

When the men - now considered the most difficult and unmanageable men in the hospital - were first admitted to hospital as young children, few appeared from the records to have very serious problems.

For example, one four year old boy admitted to a long-term hospital for children was

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described as an ‘attractive, physically normal little boy', who already had some speech. Two years later, at the age of six, he is described as becoming miserable, restless, withdrawn and disturbed. He no longer spoke. Three years later, at the age of nine, he was said to wipe faeces over himself, to have a violent temper, and to be constantly trying to get out of the ward. He was described as having ‘severely challenging behaviour’, including self injury through banging his head against the wall and with his fists - as he still does. Over the years he has also become doubly incontinent and increasingly frail, only walking with difficulty. His mother stopped visiting him many years ago. There is no one there to remember him as he was, the cheerful little boy who sat on his mother’s lap and helped her wind her wool.

What happened to this hyperactive, cheerful four year old that turned him into the unhappy, severely disturbed adult that he is now, locked away in a secure unit and controlled by powerful antipsychotic drugs?

The men who live within this ward have lived physically and emotionally deprived lives, and their individual pasts have been ignored, one could even say denied. One of the most powerful ways in which they have been dehumanized is by representing them not only as physically dangerous, but also as sexually dangerous (and at the same time sexually vulnerable). At the beginning of the research project the female psychiatrist in charge (who very seldom entered the ward) described all the men in the ward as either perpetrators or victims of sexual abuse (or both), and added that the ward ‘smelled of sex’.

Subsequent experience in the ward did not bear out any of this. There were only a few men who could have been labelled ‘sexual predators’, and the room smelled of faeces, and urine and drug-laden breath, but not of sex. But what she was really suggesting was something quite different - that these men were sexually uncontrolled, polluted and polluting, a common fantasy about the ward. And what she was saying could often be heard in the voices of other professionals, especially those who did not actually work directly with the men. There were clear undercurrents of fear, and morbid curiosity, in the way they spoke of them: fear of potentially uncontrollable sexual activity, of violence, ugliness, the unknown, and of the undefined power of people who are perceived as almost totally ‘other’. As Young (1990: 123) writes:

When the dominant culture defines some groups as different, as the Other, the members of those groups are imprisoned in their bodies. Dominant discourse defines them in terms of bodily characteristics and constructs those bodies as ugly, dirty, defiled, impure, contaminated or sick.

This ward was known as the ‘worst’ ward in the hospital, partly because it was physically large and grim, but mainly because of the exaggerated reports of the nature and behaviour of the 20 men who lived there. It was considered a ‘punishment block’ for staff, and for someone to enter voluntarily, as a researcher, was difficult for many to understand or accept.

Part of the fear and disgust that is felt in relation to people who differ so markedly from what is considered to be ‘normal’ is the failure to see beyond the immediate images that are presented. Going into the ward for the first time, at the beginning of the fieldwork, was a chastening experience, confirming the existence of my own fears and prejudices -

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emotions that I would have violently denied before going in:

When the self-locking door had slammed behind me and I stood in the ward, I was both appalled and terrified. The ward consisted of three huge bare rooms, like community halls rather than places in which to live. Some of the 20 men were sitting rocking in padded metal chairs that were bolted to the floor. Others ran round in circles, some shouting or whooping. One sat, naked, roaring loudly. One banged his head repeatedly against the wall. Another leapt and twisted and threw himself at the wall and the floor with great force. A blind man sat and rocked back and forth, screeching. In this tumult of unfamiliar sounds and movements I could see no member of staff. I was paralysed by fear, and that night I wrote in my field notes that ‘I thought I was alone in the ward’.

The statement ‘I thought I was alone in the ward’ revealed my own acquiescence in the concept of the men's social invisibility, for of course the room was full of people. I was not only excluding them from my own social world, but also denying them humanity, because of the way they looked and moved and sounded, because they were locked in this bare, deprived environment, and because I was terrified.

Gradually these emotions faded. The better I got to know the men in the long periods of the day and night that I spent with them, the more moved I was by their individuality, their desperate desire to communicate, and the extent of their individual physical and emotional suffering. The strange shapes and movements and sounds in the ward turned into individuals, and the initial shock and fear evaporated. Only by getting to know the apparently unknowable do perceptions change

But at one level, of course, the horror remains, because within this institution, and in spite of vast improvements in treatment and conditions over the years, the men continued to live segregated, deprived, and to some extent dehumanized lives.

Their segregation, their social death, has been complete - and until relatively recently those who physically died were also segregated in death. Within the area of this cluster of old ‘mental handicap’ hospitals there is a wooded area of mass graves, said to contain some 2000 bodies, where residents were buried, one upon another, until some fifty years ago.

Thus death is not the end of social exclusion - where and how a person is buried can continue their exclusion beyond death, even into future generations.

During their lives, everything possible had been done, whether intentionally or by default, to deprive them of their individual and social identities. This is not to say that they were not aware of themselves as individual human beings – it is clear that they knew perfectly well who they were at various levels, but because they were rarely treated as full human beings, their identities were ignored, and perhaps the most distressing of all, their own sense of their own identity was denied.

The men’s medical notes, from the time they were institutionalised in early childhood, are often the main sources for the perceived identity of each man. Because they have no speech, and cannot present their own pasts, their identities are constructions by others: by care staff and by professionals who come briefly in and out of their lives. Their personal histories are lost, and are replaced by other people’s records, made for other people’s purposes.

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It is significant that most of the time they are not really considered as individuals who have a ‘past’ at all. Their lives in the institution are not really seen as sequences in time, or as consisting of development or change. They are, and always have been in a sense, only what they are today. The constant assessments have not recorded the changes in them as human beings, nor have their bulky volumes of medical notes; they emerge from these as objects who have been bitten or punched by others, and who have themselves bitten or punched others, whose drugs have been upped and downed and upped again, whose teeth have rotted, cataracts enlarged, and so on.

As I said, one of the aims of my research was to try to restore the identity of these men; to give them some sort of pasts, and enhance their present lives, in order to improve their futures. That sounds very glib. But we, as ordinary people living in the ordinary world, are treated very differently. We have pasts that other people area aware of, and on which we, and others round us, constantly build. We all have a wide set of connotations. We have recognised individual identities. Of course all the men had their own individual identities, and were aware to some extent of their own histories.

It is now widely accepted that, in addition to biological and syndrome-specific causes, many of the enduring behavioural problems of people who have lived most of their life in institutions are the result of their damaging and traumatic life experiences, including emotional, physical, and sexual abuse, and as I got to know the men, it became clear that their behaviour was often prompted by memories of trauma and loss. The emotional and physical suffering of the men meant that they constantly behaved in angry and distressed ways. This normally led to increased medication, not by the people around them responding as they would to other people crying out for help in this way.

For example, one man frequently spread urine and faeces over himself, and around the walls and floor. One day when he was doing this – very angry and red-faced, making obscene gestures and shouting ‘wanker’ at me as I drew near - I asked him what was the matter. He stopped shouting and making gestures, and asked: ‘where’s Daddy’?

No one had thought to tell him that his father had not visited him recently because he had died.

Another man spent much of the time throwing himself with huge force, shoulder first, at the floor and at the wall. He was immensely strong, and roared loudly, appearing very threatening, his face usually bruised and bloody. Then suddenly his behaviour would change. He would stop throwing himself around and sit down on my feet, take my hand to his head to stroke his hair, and say ‘mummy’.

It is significant that these men, and many (if not all) of the others in the ward, obviously still felt themselves to be sons, they remembered that they had mothers and fathers and brothers and sisters. But as part of their loss of social and individual identity, they had also been denied their familial and kin identity

There was one man, David, who stripped off his clothes and strode naked around the ward all day, usually roaring loudly.

The fact that he was allowed to be naked meant that he was not perceived as a social adult, or as an adult man; he was excluded from these normal social categories, and to all intents and purposes his sexuality was denied.

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David's story was true, to a greater or lesser extent, of all the men in the ward. They were denied normal gender roles, and to a great extent their sexuality was mocked.

There was little acknowledgement of their individual desires, needs, hopes and fears as adult men, or of the possibility that they might have normal sexual feelings for each other.

To most people who come into the ward David is seen simply as someone who is always naked, who roams the ward, bellowing loudly, who has no useful speech, has cataracts, epilepsy, and who is on anticonvulsant and powerful antipsychotic drugs. This has not been my experience of David. He is far from being a non-person. I have gradually got to know him well, and when I sit with him, and talk to him, he will take my hand, and look at me quietly, instead of avoiding my eyes as he is wont to do.

As part of the research I visited parents or other relatives if they were still traceable. When I went back into the ward I would talk to the men about their parents, their siblings, and their homes. The reactions to this were sometimes quite startling. When I had visited David’s parents I told him that I had seen them, and talked to him about them, and his brother, and the house where he had lived as a child, and I said that I expected that he missed them.

I told him that his father loved him (because I believe he does), and that he had cried when I spoke about David, but he never visits the ward, and used to beat him as a small child. Now, as I talked to David, he stopped roaring, and sat and looked at me, and said ‘David crying’, and indeed he did have tears in his eyes. Then suddenly, and quite clearly, he said ‘bless you’. I had never before heard him say anything spontaneously before that was not a one word demand. No one around us disputed what he had just said. Those words, dredged up from somewhere, indicated that he had understood, and emphasized the fact, usually ignored, that he has feelings and memories, as well as needs.

The incomplete and fragmented stories that I learned from these men show how a group of young children, instead of being helped to develop into men whose adulthood and gender were acknowledged and respected had, over the years, gradually been pushed into ways of behaving that led them further and further into the category of ‘other’.

They had, over time, come to be perceived as dangerous, and as sexual predators, whether they were or not, and this was often used as the justification for controlling them within a locked environment, and led to perceptions of them as non, or barely human.

Archaeologists and anthropologists have, over the last decades, focused their attention on forms of social exclusion, not least as a result of the earlier writings of such people as Goffman and Foucault. In all parts of the world, and over the centuries, people have been socially, and in many cases, physically excluded, because of the perception of them as different from others in their social group.

This perception of difference, by definition, involves concepts of sameness, non-difference, of ‘normality’ and hence of ordinariness and safeness, categories within which we all probably consider ourselves to be.

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Over recent decades there has been a growing interdisciplinary body of literature which has investigated the nature and modes of creation of ‘otherness’, as well the material which has been designated evidence for ‘exclusion’.

The criteria given for exclusion of any specific group of people from a society have not been static, unique events but ones that change over time. Also, both physical and social exclusion are not recent social developments, nor associated only with literacy, complex societies and state organisation. There is evidence for exclusion and inclusion within prehistoric and other societies known only from archaeological remains, texts or iconography.

What determines whether an individual or a group is thought of as 'different', and to what extent does any such ‘difference’ result in social exclusion? In European societies people who are considered to be mad – those who are mentally ill or who have intellectual disabilities (the current term for mental handicap) are frequently socially and often physically excluded. But in some cultures madness is simply considered to be something that occupies the body, and can therefore be accommodated within the social group: the rights and recognition of the self as a full person in the community are unaffected (Murray Last). This is almost the antithesis of British society, for example, in which the body and the mind are inextricably bound up with the ‘self’. Thus who is excluded from society is not an a priori category, but arises from a dynamic body of sociocultural factors. Different cultures interpret different things as 'abnormal', different or dangerous – i.e. ‘other’.

In all societies there exists a concept of ‘otherness’. As Deborah Marks (1999: 153) writes: ‘Our sense of citizenship and community is defined by boundaries which demarcate zones of inclusion and exclusion’. Whoever is unwanted, for whatever reason, is liable to be labelled by the dominant population as ‘other’, and when a category is thus formed, it will be vested with a mythology and a set of rules regarding who is to be excluded or not, i.e., who is perceived as the same or different from a culturally defined ‘we/us’. In this way the main body of the group can better define itself.

If a group has traditionally been socially excluded, beliefs about them and attitudes towards them do not necessarily change even when cultural rules are changed. Hyland’s study of leprosy in Nepal, for example, shows that people who are medically cured in the context of Western medicine do not then return to social health or social integration; they have in fact dies a social death, from which it may be difficult to return to life again.

The extreme limit of physical and social exclusion is death. As recently as the early 1940s the German "euthanasia" programme killed thousands of men and women, including adults and children with mental and physical disabilities. Our own record in Britain during the war was not exactly blameless - during the years of food shortages and civilian staff shortages, the death rate of people living in institutions was far higher than that among the general population.

In countries where killing people is deemed unacceptable, sterilisation has been used to prevent unwanted characteristics continuing into the following generations. In Sweden, for example, some 60,000 women who were considered genetically inferior, women

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from non-Nordic ethnic backgrounds or women with intellectual disabilities, were forcibly sterilised up until the 1970s. The same thing was happening in other countries, and also in Alberta in Canada.

I am going to talk about what happens when people are marginalised from society, particularly those who are physically as well as socially segregated

In Britain, although there has not been a ‘eugenics policy’ there has been a long history of shutting away out of sight those who were characterised in the 1940s by a neurologist as ‘the tortured and convulsed, grotesque and absurd, useless and foolish and entirely undesirable’. Institutionalization is also a means whereby people are silenced. Segregating people in single-sex environments also has the effect of ensuring that men and women are unable to procreate.

In spite of 60 years of government policy to close the old mental institutions, the last one only closed within the last decade. It is not surprising, therefore, that the emotive and prejudiced view quoted above, which equates physical and mental disability with grotesqueness and uselessness and the ‘entirely undesirable’, still reflects the attitudes of many people.

The social (and often physical) exclusion of people who are classified as mentally ill, and/or intellectually or physically disabled, is an extreme example of the way in which human beings act in order to separate themselves from those who are considered 'different'. Such exclusion of madness, disability and disease occurs not only because such people (however defined in any particular culture) can be claimed to embody 'difference', but also because such categories threaten everyone throughout their life, from birth to death.

In western cultures there has always been a ‘fear of the mad and distaste for their visible presence’ as Arnold writes (Arnold 2006). Gilman suggests that we try to rid ourselves of the fear of our own mental and physical disintegration by locating it in someone else: 'The fear we have of our own collapse does not remain internalized. Rather, we project this fear on to the world in order to localize it… For once we locate it, the fear of our own dissolution is removed'. Gilman (1988: 1). In this way we protect ourselves by projecting all that we deem ugly or mad onto others.

In all parts of the world, and over the centuries, people have been socially, and in many cases, physically excluded, because of the perception of them as different from others in their social group. One of the groups in society who have been physically as well as socially excluded are people who are perceived to be ‘mad’, whether through mental illness, intellectual disability or epilepsy.

Men and women with severe intellectual disabilities, who also have mental health needs, are particularly disadvantaged and stigmatized. Many have characteristics which people in the wider community tend not to want to confront in their day to day lives - they may look very strange and act in uninhibited and sometimes frightening ways.

Their presence in society can be disturbing and unsettling to the other members of a social group. As a result, such people tend to be labelled, separated out and socially excluded.

Furthermore, to be even safer, we have tended not only to socially exclude them but also, in many cases, physically exclude them, by segregating them in closed institutions

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of various kinds.

Historically, in Britain, this is what we have done for centuries. In the old days ‘mad’ people were locked away, segregated from society. Everyone has heard of Bedlam, which housed the lunatics. The public used to pay to watch them. We are still mired in this history, this cultural memory of madness over the generations.

Children who are separated from their parents at an early age and are cared for in institutions often lose all chance of learning normal social behaviour, and thus become increasingly socially ‘unacceptable’ adults.

In spite of attempts to treat and educate institutionalised men and women in the past and present, attitudes to people who behave in what are seen as inappropriate and ‘dangerous’ ways have ensured that they continue to live segregated and marginal lives. Once people are institutionalised they are often perceived as non-human is some ways. Hence the levels of institutional, physical, sexual and emotional abuse of all kinds that still persist, as recent exposure of institutional practices in the UK has shown. Yet another report on abuse of all kinds in a hospital for people with intellectual disabilities, Winterbourne View, has very recently been exposed on BBC television.

The question of whether people are believed to be fully human or not is illustrated by Charles Dickens, in Barnaby Rudge, in his portrayal of the man he describes as an ‘idiot’:

Startling as his aspect was, the features were good, and there was something even plaintive in his wan and haggard aspect. But, the absence of a soul is far more terrible in a living man than a dead one; and in this unfortunate being its noblest powers were wanting. (Dickens 1973 [1841]: 73-74)

Since we believe that all human beings have souls, what then are the implications of this belief that ‘idiots’ have no souls?

Another category of people, who others sometimes find difficult to accommodate in their concept of ‘humanness’, is that of hermaphrodites. Ruth Gilbert’s discussion of hermaphrodites demonstrates how difficult, perhaps impossible, it is to come to terms with the concept of a fellow human who does not fall clearly within one or other of two categories, male or female, into which at least the Western world believes itself to be divided. In some respects this is the most extreme example of the ‘other’, a person who cannot be referred to as either a man or a woman, as ‘he’ or ‘she’, ‘him’ or ‘her’. The English language, at least, has no way to tackle this except by using the neutral term ‘it’, which in English refers to objects or animals, i.e. non-humans.

In the seventeenth and eighteenth centuries, one of the ways of dealing with hermaphrodites was to eroticize them. At this level of analysis little seems to have changed: even now, in the twenty-first century, a search for hermaphrodites on the Internet will lead first to pornographic sites, consisting of pictures of ‘hermaphrodites’ i.e. people displaying both male and female sexual organs, in erotic poses.

In Western cultures of the world - in which success is measured in terms of academic and career success, independence and making enough money to accumulate goods and property of all kinds - attitudes towards people with intellectual disabilities have tended

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to be negative, sometimes to an extreme. In many Western countries eugenics policies were enacted as recently as the early 20th century, to prevent the spread of ‘unwanted’ characteristics in the population, including mental illness and intellectual disabilities. Countries with eugenics policies included Norway, Sweden, Denmark, Finland and Japan, Alberta and British Columbia in Canada, and many states in America (Kevles 1999). In 1942, the American Journal of Psychiatry carried a debate about whether ‘feeble-minded’ children should be killed or not (Joseph 2006). The proponent of killing children (which was supported by an anonymous editor) was a neurologist, Foster Kennedy, who proposed that if a child with severe disabilities reached the age of five years, then ‘it is a merciful and kindly thing to relieve that defective - often tortured and convulsed, grotesque and absurd, useless and foolish, and entirely undesirable - of the agony of living’ (Kennedy 1942: 14). This was not abortion, nor simply letting babies die after birth, but the proposed killing of five year old children.

The extreme limit of physical and social exclusion is death. As recently as the early 1940s the German ‘euthanasia’ programme killed thousands of intellectually and physically disabled children and adults. It could be argued that the record in Britain during the war was not exactly blameless - during the years of food shortages, civilian staff shortages and reduced funding, the death rate of people living in institutions was far higher than that among the general population (Fakhoury and Priebe 2007). This was also true in France (Chapireau 2009).

Most eugenics policies were rescinded before or during the 1970s. However, eugenics policies are not totally far in the past. For example, in China, the Maternal and Infant Health Care Law was enacted as recently as 1994 (United Nations Economic and Social Commission for Asia and the Pacific website). This stipulates that, before a couple can marry, they must undergo a medical examination in order to identify any serious genetic diseases, infectious diseases or ‘relevant’ mental diseases. If one or the other is found to have any of these then the marriage cannot take place unless the woman commits herself to long-term contraception or undergoes tubal ligation, so that she cannot conceive. When it has been established that she is unable to bear a child the marriage can take place.

Britain has never had a formal eugenics policy, in spite of the existence of a powerful Eugenics Society in the past, and a continuing thread of eugenicist thinking. However, it has tended, since medieval times, to shut away the ‘tortured and convulsed, grotesque and absurd, useless and foolish’ as Kennedy describes them, not only from sight, but also generally out of the consciousness of the rest of the population. Furthermore, segregation in single-sex environments also has ensured that men and women are unable to procreate.

Arnold, in her discussion of attitudes in the 14th century writes of the ‘fear of the mad and distaste for their visible presence’ (Arnold 2006). These attitudes can still be found in the 21st century, some 700 years later.

It is easier to exclude such people from social life, and thus not to have to acknowledge their existence. It is simpler to think of them as not really people at all, and if they are not human beings then it does not matter how they are treated. Hence the levels of institutional, physical, sexual and emotional abuse of all kinds that still persist here in the UK, as recent exposure of institutional practices has shown.

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The dehumanizing process of people living segregated lives in institutions pervades all aspects of their selfhood, and by so doing propels them further and further into psychological and social states that are perceived negatively by others, and thus further and further into the category of ‘other’.

People who live in institutions are conceptualized and perceived by others very differently from similar people living in the community. Mary Douglas (1966: 97) writing about purity and danger, and concepts of pollution and taboo, draws attention to this difference in perception of those who live among normal people in normal social environments and those who live in institutions. When people move into a mental hospital they enter a ‘marginal state’. They no longer have a place in the social system, and are left out of what Douglas (1966) calls the ‘patterning of society’. People who enter this marginal state are then perceived as both vulnerable and dangerous.

What is the symbolism of being institutionalized? Why is it that once someone crosses the threshold into an institution, people’s perceptions of them change, attitudes to their behaviour are different and they become ideologically as well as physically excluded? We know that any physical threshold can symbolize new beginnings and new statuses. Bridegrooms carry new brides over the threshold in order to symbolize these new statuses, a new relationship and new rights and responsibilities.

The crossing of the threshold of a mental institution certainly implies a change in status, if not such an optimistic one.

But moving into an institution is not just like moving house. Interwoven with the transition are other strands of change: there is an element of abandonment, of the relinquishment by the family of their responsibilities, and of rejection by society. At the same time there is the yielding up of the confined person’s own responsibility for themselves, not only for their own bodies, but also for their own minds. They begin to live in a closed environment, as Goffman said, in which place and time are forever intertwined, and an environment in which social existence and relationships are replaced by the constant testing, diagnosing, assessing, classifying and organising that have become integral to institutional life.

What happens to people when they are segregated in this way - left out of the ‘patterning of society’ from childhood onwards?

The effects of life in any kind of total institution are profound. In The House of the Dead, Dostoevsky’s account of his years as a political prisoner in the 1850s, he described his own reactions to living constantly among other prisoners (Dostoevsky [1860] 1950: 20): ‘Besides the loss of freedom, besides the forced labour, there is another torture in prison life, almost more terrible than any other - that is, compulsory life in common.’ He also describes the intense effects on others (Dostoevsky [1860] 1950: 232-233):

All the convicts lived in prison not as though they were at home there, but as though they were...at some temporary halt. Even men sentenced for their whole life were restless or miserable ...This everlasting uneasiness …sometimes found involuntary utterance, at times so wild as to be almost like delirium, and…often persisted in men of apparently the greatest common sense.

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And he writes: ‘To be alone is a necessity of normal existence… otherwise, in this forced communal life, you become a hater of mankind’ (Quoted in Carr 1931: 60) and

When he has lost all hope, all object in life, man often becomes a monster in his misery (Dostoevsky [1860] 1955: 234).

Goffman (1966) wrote about the nature of the total institution, and about the enormous gulf between life inside and outside:

People who live in a total institution do everything in the same place, under a single authority, in the company of a group of people who are all treated alike, and at the same time. There are rigid schedules, with one pre-arranged activity leading to the next at an allotted time, and everything is dictated by one authority, and under one ‘rational plan’ (Goffman 1966).

When people enter an institution, not only does their life change fundamentally, but so too do the attitudes and perspectives of other people towards them. They are at once perceived as ‘different’ and ‘other’.

Sibley (1995), in his discussion of difference in a range of contexts, writes:

The social self [can] be seen as a place-related self, and this applies also to stereotypes of the other which assume negative or positive qualities according to whether the stereotyped individual or group is ‘in place’ or ‘out of place’ (Sibley)

Primo Levi (1987) writing about his experiences as a prisoner in a German prison camp during World War II, describes the effects that entering an institution of this kind has on individuals:

Imagine now a man who is deprived of everyone he loves, at the same time of his house, his clothes, in short, of everything he possesses: he will be a hollow man, reduced to suffering and needs, forgetful of dignity and restraint, for he who loses all often easily loses himself (Levi 1987: 33).

Primo Levi again:

For living men, the units of time have a value… but for us, hours, days, months spilled out sluggishly from the future into the past… the future stood in front of us, grey and inarticulate, like an invisible barrier. For us, history had stopped (Levi 1987: 123).

This timelessness and isolation was also apparent in the locked ward that I worked in, even to me as a researcher, who was free to leave at any time. I wrote in my fieldnotes:

This early period, after they have got up and before it is time to get dressed and washed, is one of the times in the ward when there is no time. There is an unreality about it, and yet also an awful reality, a turmoil and yet a kind of peace. There is no other world, no other life outside. No time. Just this. (JH fieldnotes)

Being segregated from society in a closed institution, that is, locked up, whether in a psychiatric hospital, prison, concentration camp or wherever, does not simply change where someone lives, it changes the parameters and experience of life, and, equally important, changes the way in which an individual is perceived by other people.

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There is no doubt that in fact people do change, especially if they are institutionalised for long periods. It is clear that the transformation of the men in the locked ward that I spent time in, most of whom had been institutionalised before the age of eight, into the popular stereotype of ‘mad’ people in lunatic asylums was probably as much the result of 30 or 40 years incarceration in the institution, as it is of their individual disabilities and characteristics.

In the community individuals have many aspects to their lives, interacting with many different people in different contexts. They also have recognised pasts and futures. In the total institution there is no other context to people’s lives, they are known only to those who live or work in the same environment, and they are thus seen always as they are now, today, with no individual pasts. Thus there is a denial of their own memories of their lived experiences, and no hope of a different future.

To illustrate these aspects of the effects of life in a total institution I am going to talk about an ethnographic research project that I carried out with a group of people who are among the most vulnerable in our society, 20 men who lived in a locked ward of an old “mental handicap” hospital. All of them had severe intellectual disabilities and mental health problems, and almost all of them had lived in an institution since the age of eight or younger. When they were first admitted to a children’s hospital they were often described simply as youngsters who were hard to manage, or were institutionalised simply because their mother was unwell. Now, after 30 or 40 years of living in a closed institution, they fulfil the popular stereotype of ‘mad’ people - they fling themselves at the floor and walls, bang their heads, roar and screech, tear off their clothes. Some injure themselves or attack each other, and anyone who comes into the ward. Others pace or run almost continuously around the huge bare rooms, or crouch alone against the walls, watching.

The research used ethnographic methods. I set out to try to experience and understand the culture of the ward from within it, i.e. from the point of view of the people who lived in it. Ideally, of course, I would have lived on the ward, actually become a resident, but living with the men on the locked ward was not considered to be a viable option. Instead I spent around 300 hours of participant observation with the men over time, at all times of the day and night, getting to know them, how they communicated, and the nature of their experiences. In other words, the study attempted to discover who they were, as opposed to the institutional ways in which they were usually described, i.e. in terms of the severity of their disabilities, their challenging behaviour, and their physical and suggested sexual dangerousness.

The aim was to get to know them, to find out what their relationships were, to absorb the ethos of the ward, and to try to discover - from people who mostly cannot express themselves in speech - what their experiences, hopes and fears might be.

I hoped that it would be possible to retrieve and restore, to some extent at least, their individual identities, lost over the years of institutionalisation, through an understanding, however incomplete, of their individual experiences.

Because the men could not speak (some spoke a few words), other people who had contact with them, mainly care staff and the occasional doctor, seemed to assume that they were essentially unknowable beyond the superficial sum of their impairments, basic needs and challenging behaviour. There was little acknowledgement of their

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human qualities, and little evidence that staff had tried to build up meaningful reciprocal relationships with them as individuals.

Because they had no speech, and could not present their own pasts, their identities were constructions by others who had come briefly in and out of their lives. Their personal histories were lost, and had been replaced by other people’s records, made for other people’s purposes. They were not perceived or represented as social beings,

Given Dostoevsky’s observations about men detained in political prisons, it is not surprising, perhaps, that the men in this ward, locked away as small children, became restless and miserable, even, perhaps, ‘haters of mankind’, and began to give voice to wild, involuntary utterances, and have ‘become monsters in their misery’.

The lives of the men in the ward consisted of almost total social and physical exclusion, and there was little if any stimulation and activity. There was disregard of the men’s constant attempts to communicate, a lack of physical care, and no attention paid to their mental health problems and emotional suffering. They lived bleak, routine-led lives in the context of extreme physical and emotional deprivation, and practices which were in many ways abusive.

These separate lives, and the treatment that these individuals have received over the years, have resulted not only in loss of individual identity, but also social identity, because they had no visibility in the community beyond the hospital.

Most had also lost their familial identity, their last contact with any members of the family being many years ago, but through getting to know the men as individuals it became clear that they continued to remember their families, and their place within them, and wanted to still be part of a family - to feel that they ‘belong’. The men were known to have suffered abuse of many kinds. This is not only because they were unable to report what other people did to them, but also because others often saw them as being quite different from themselves, without their own feelings and needs, and hence they were seen by some as 'acceptable' victims. Once people are thought of in this way they are no longer seen as full human being, and it seems that other people then feel free to disregard, or deny the existence of thoughts, emotions, hopes and fears, and even of pain.

It was obviously easier for many people not to understand, not to perceive the men as social beings, so that it continued to be possible to treat them as they did. This almost total segregation from the outside world meant that the institutional culture that had persisted for so many years could continue to be condoned, and changes need not be made, because no one outside really knew, or cared, about what happened from day to day.

**The inhuman levels of treatment of the men in the locked ward had inevitable adverse effects on them. Since childhood they had been labelled as having challenging behaviour, and there is little evidence that this had ever been dealt with except through the use of psychotropic medication. Most of them were also labelled as being sexually abusive, whether they were or not, thereby making them even more of outcasts than they already were. Their status as victims of abuse themselves was rarely acknowledged.

The threat, however misconceived, of potentially uncontrollable sexual activity, among

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people who are perceived as almost totally ‘other’, inevitably leads to further rejection and social exclusion. The dehumanizing process of people living segregated lives in institutions pervades all aspects of their selfhood, and by so doing propels them further and further into psychological and social states that are perceived negatively by others. Over the years their stereotypical behaviour and challenging behaviour had intensified, there had been a gradual loss of individual and social skills, and of the ability to speak.

The men’s medical records show that many of them were admitted simply as difficult

to manage children with intellectual disabilities, but after more than 30 years of life in a closed institution they had all developed severely challenging behaviour, and now appeared to fulfil the popular stereotype of Bedlam, of ‘mad’ people in institutions.

The perception of them as men was largely one of dangerousness, both physical and sexual. There was little acknowledgement of their individual desires, needs, hopes and fears as adult men. Their challenging behaviour defined the way they were perceived, and thus how they were treated.

The men had become socially invisible; they no longer had a place in the wider social system, they were left out of what Mary Douglas called ‘the patterning of society’. Their social identities were lost, resulting in extreme vulnerability to the actions and decisions of the constantly changing managers and care staff who were responsible for them in their closed world.

When the men - now considered the most difficult and unmanageable men in the hospital - were first admitted to hospital as young children, few appeared from the records to have very serious problems.

For example, one four year old boy admitted to a long-term hospital for children was described as an ‘attractive, physically normal little boy', who already had some speech. Two years later, at the age of six, he is described as becoming miserable, restless, withdrawn and disturbed. He no longer spoke. Three years later, at the age of 9, he was said to wipe faeces over himself, to have a violent temper, and to be always trying to get out of the ward. He was described as having ‘severely challenging behaviour’, including self injury through banging his head against the wall and with his fists, as he still does. Over the years he had also become doubly incontinent and increasingly frail and only walked with difficulty. His mother stopped visiting him many years ago. There is no one there to remember him as he was, the cheerful little boy who sat on his mother’s lap and helped her wind her wool.

What happened to this hyperactive, cheerful four year old that turned him into the unhappy, severely disturbed adult that he is now, locked away in a secure unit and controlled by powerful antipsychotic drugs?

The men who live within this ward have lived physically and emotionally deprived lives, and their individual pasts have been ignored, one could even say denied. One of the most powerful ways in which they have been dehumanized is by representing them not only as physically dangerous, but also as sexually dangerous (and at the same time sexually vulnerable). At the beginning of the research project the female psychiatrist in charge (who very seldom entered the ward) described all the men in the ward as either perpetrators or victims of sexual abuse (or both), and added that the ward ‘smelled of sex’.

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Subsequent experience in the ward did not bear out any of this. There were only a few men who could have been labelled ‘sexual predators’, and the room smelled of faeces, and urine and drug-laden breath, but not of sex. But what she was really suggesting was something quite different - that these men were sexually uncontrolled, polluted and polluting, a common fantasy about the ward. And what she was saying could often be heard in the voices of other professionals, especially those who did not actually work directly with the men. There were clear undercurrents of fear, and morbid curiosity, in the way they spoke of them: fear of potentially uncontrollable sexual activity, of violence, ugliness, the unknown, and of the undefined power of people who are perceived as almost totally ‘other’. As Young (1990: 123) writes:

When the dominant culture defines some groups as different, as the Other, the members of those groups are imprisoned in their bodies. Dominant discourse defines them in terms of bodily characteristics and constructs those bodies as ugly, dirty, defiled, impure, contaminated or sick.

This ward was known as the ‘worst’ ward in the hospital, partly because it was physically large and grim, but mainly because of the exaggerated reports of the nature and behaviour of the 20 men who lived there. It was considered a ‘punishment block’ for staff, and for someone to enter voluntarily, as a researcher, was difficult for many to understand or accept.

Part of the fear and disgust that is felt in relation to people who differ so markedly from what is considered to be ‘normal’ is the failure to see beyond the immediate images that are presented. Going into the ward for the first time, at the beginning of the fieldwork, was a chastening experience, confirming the existence of my own fears and prejudices - emotions that I would have violently denied before going in:

When the self-locking door had slammed behind me and I stood in the ward, I was both appalled and terrified. The ward consisted of three huge bare rooms, like community halls rather than places in which to live. Some of the 20 men were sitting rocking in padded metal chairs that were bolted to the floor. Others ran round in circles, some shouting or whooping. One sat, naked, roaring loudly. One banged his head repeatedly against the wall. Another leapt and twisted and threw himself at the wall and the floor with great force. A blind man sat and rocked back and forth, screeching. In this tumult of unfamiliar sounds and movements I could see no member of staff. I was paralysed by fear, and that night I wrote in my field notes that ‘I thought I was alone in the ward’.

The statement ‘I thought I was alone in the ward’ revealed my own acquiescence in the concept of the men's social invisibility, for of course the room was full of people. I was not only excluding them from my own social world, but also denying them humanity, because of the way they looked and moved and sounded, because they were locked in this bare, deprived environment, and because I was terrified.

Gradually these emotions faded. The better I got to know the men in the long periods of the day and night that I spent with them, the more moved I was by their individuality, their desperate desire to communicate, and the extent of their individual physical and emotional suffering. The strange shapes and movements and sounds in the ward turned

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into individuals, and the initial shock and fear evaporated. Only by getting to know the apparently unknowable do perceptions change

But at one level, of course, the horror remains, because within this institution, and in spite of vast improvements in treatment and conditions over the years, the men continued to live segregated, deprived, and to some extent dehumanized lives.

Their segregation, their social death, has been complete - and until relatively recently those who physically died were also segregated in death. Within the area of this cluster of old ‘mental handicap’ hospitals there is a wooded area of mass graves, said to contain some 2000 bodies, where residents were buried, one upon another, until only fifty years ago.

Death is thus not the end of social exclusion - where and how a person is buried can continue their exclusion beyond death, even into future generations.

During their lives, everything possible had been done, whether intentionally or by default, to deprive them of their individual and social identities. This is not to say that they were not aware of themselves as individual human beings – it is clear that they knew perfectly well who they were at various levels, but because they were rarely treated as full human beings, their identities were ignored, and perhaps the most distressing, their own sense of their own identity, was denied.

The men’s medical notes, from the time they were institutionalised in early childhood, are often the main sources for the perceived identity of each man. Because they have no speech, and cannot present their own pasts, their identities are constructions by others: by care staff, and by professionals who come briefly in and out of their lives. Their personal histories are lost, and are replaced by other people’s records, made for other people’s purposes.

It is significant that most of the time they are not really considered as individuals who have a ‘past’ at all. Their lives in the institution are not really seen as sequences in time, or as consisting of development or change. They are, and always have been in a sense, only what they are today. The constant assessments have not recorded the changes in them as human beings, nor have their bulky volumes of medical notes; they emerge from these as objects who have been bitten or punched by others, and who have themselves bitten or punched others, whose drugs have been upped and downed and upped again, whose teeth have rotted, cataracts enlarged, and so on.

As I said, one of the aims of my research was to try to restore the identity of these men; to give them some sort of pasts, and enhance their present lives, in order to improve their futures. That sounds very glib. But we, as ordinary people living in the ordinary world, are treated very differently. We have pasts that other people area aware of, and on which we, and others round us, constantly build. We all have a wide set of connotations. We have recognised individual identities. Of course all the men had their own individual identities, and were aware to some extent of their own histories.

It is now widely accepted that, in addition to biological and syndrome-specific causes, many of the enduring behavioural problems of people who have lived most of their life in institutions are the result of their damaging and traumatic life experiences, including emotional, physical, and sexual abuse, and as I got to know the men, it became clear that their behaviour was often prompted by memories of trauma and loss. The

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emotional and physical suffering of the men meant that they constantly behaved in angry and distressed ways. This normally led to increased medication, not by the people around them responding as they would to other people crying out for help in this way.

For example:

One man frequently spread urine and faeces over himself, and around the walls and floor. One day when he was doing this – very angry and red-faced, making obscene gestures and shouting ‘wanker’ at me as I drew near - I asked him what was the matter. He stopped shouting and making gestures, and asked: ‘where’s Daddy’?

No one had thought to tell him that his father had not visited him recently because he had died.

Another man spends much of the time throwing himself with huge force, shoulder first, at the floor and at the wall. He is immensely strong, and roars loudly, appearing very threatening, his face usually bruised and bloody. Then suddenly his behaviour would change. He would stop throwing himself around and sit down on my feet, take my hand to his head to stroke his hair, and say ‘mummy’.

It is significant that these men, and the others in the ward, obviously still feel themselves to be sons, they remember that they had mothers and fathers and brothers and sisters. But as part of their loss of social and individual identity, they have also been denied their familial and kin identity

There is one man, David, who strips off his clothes and strides naked around the ward all day, usually roaring loudly.

The fact that he is allowed to be naked means that he is not perceived as a social adult, or as an adult man; he is excluded from these normal social categories, and to all intents and purposes his sexuality is denied.

David's story was true, to a greater or lesser extent, of all the men in the ward. They were denied normal gender roles, and to a great extent their sexuality was mocked.

There was little acknowledgement of their individual desires, needs, hopes and fears as adult men, or of the possibility that they might have normal sexual feelings for each other.

To most people who come into the ward David is seen simply as someone who is always naked, who roams the ward, bellowing loudly, who has no useful speech, has cataracts, epilepsy, and who is on anticonvulsant and powerful antipsychotic drugs. This has not been my experience of David. He is far from being a non-person. I have gradually got to know him well, and when I sit with him, and talk to him, he will take my hand, and look at me, instead of avoiding my eyes.

As part of the research I visited parents or other relatives if they were still traceable. When I went back into the ward I would talk to the men about their parents, their siblings, and their homes. The reactions to this were sometimes quite startling. When I had visited David’s parents I told him that I had seen them, and talked to him about them, and his brother, and the house where he had lived as a child, and I said that I expected that he missed them.

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I told him that his father loved him, because I think he does, and that he had cried when I spoke about David, but he never visits the ward, and used to beat him as a small child. Now, as I talked to David, he stopped roaring, and sat and looked at me, and said ‘David crying’, and indeed he did have tears in his eyes. Then suddenly, and quite clearly, he said ‘bless you’. I had never before heard him say anything spontaneously before that was not a one word demand. No one around us disputed what he had just said. But those words, dredged up from somewhere, indicated that he had understood, and emphasized the fact, usually ignored, that he has feelings and memories, as well as needs.

The incomplete and fragmented stories that I learned from these men show how a group of young children, instead of being helped to develop into men whose adulthood and gender were acknowledged and respected had, over the years, gradually been pushed into ways of behaving that led them further and further into the category of ‘other’.

They had, over time, come to be perceived as dangerous, and as sexual predators, whether they were or not, and this was often used as the justification for controlling them within a locked environment, and led to perceptions of them as non, or barely human.

All this makes the nature of their experience quite unlike those who seemingly started out with similar disabilities and problems, but who were kept at home as children, and have lived with their families all their lives. The children who stay at home do have pasts and futures, and have reciprocal relationships. They live at home with their families and have not been totally excluded from society.

Because of the strength of the relationship between parents and their adult children living at home, it was possible for a mother of an adult son with profound intellectual disabilities to say:

I really do love his company…we have a good thing going, me and him… I don’t see it as a burden, its a positive relationship, we enjoy each other’s company. He’s 21 this year, I am so proud of him that he’s reached 21.

And another:

Everything I do has got Davey at the end of it or at the beginning of it. My heart is always where he is... I feel closer to him than to anybody, I’m not worried… about what I’m missing out because none of it, if I didn’t have him, none of it is worth anything, anyway.

Compare this with a typical institutional assessment of Rob, who lives in the locked ward:

Physical health: good. Psychiatric diagnosis: autism. PIMRA scores low. Medication: Clopixol, Procyclidine, Chlorpromazine, with Diazepam and Promethazine when necessary. Adaptive Behaviour Scale: tenth decile. Brief ability/disability assessment scale: fully ambulant. Unable to read, write or count, very few spoken words. Said to enjoy television. Aberrant Behaviour Checklist: high in irritability. Physically aggressive. Seeks attention. Injures self. Screams when agitated.

Although it is parents who have the most positive perceptions of their children, other people’s attitudes to people with severe intellectual disabilities and mental health

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problems who live at home is tempered by the fact that they have not been physically excluded. The families themselves may often feel socially isolated, but to some extent, at least, their adult children are perceived by others as sons or daughters, siblings, grandchildren, nephews and nieces, neighbours, and thus have some degree of social identity. Men and women who have been segregated for most of their lives, on the other hand, are not perceived to have any social identity, which has led to a degree of both desocialization and dehumanization.

The institution in which these men lived has now closed, and the men moved into smaller homes, described as ‘in the community’. I have visited them at intervals over the ten years since they moved. The men still live largely institutionalized lives; they are still, in a sense, just contained, rather than developing their own individual lives, and they still live within the old paradigm of social exclusion and denial of individual identity and autonomy. There appear to be few fundamental changes in professional and social attitudes, and as a result, these men continue to live socially excluded and forgotten lives inside their homes “in the community”.

This raises the question of whether, once people have been socially and physically segregated from society, and have become dehumanised, and perceived as unclean and polluted, it is in fact possible for them to be reabsorbed into the community.

The experiences of institutionalised people with complex disabilities and mental health problems can be placed in a wider context, drawing on a range of witness accounts from people who have lived in other kinds of total institutions, including psychiatric hospitals, prisons and concentration camps. To what extent, and in what ways, are the experiences of these very different types of institution similar to that of a locked ward of an old ‘mental handicap’ hospital? What differences and similarities are found in the behaviour and attitudes of the people who work with them?

To what extent, and in what ways, are the experiences of life in these very different types of institution similar, and have comparable effects on those incarcerated? Is the ‘mad’ behaviour of the men in the locked ward the result of, or part of, their intellectual disability, or are they behaving in ways that other people might behave in the same circumstances?

This material from other groups of people, who have been segregated from society for long periods in other types of institution, demonstrates that it is not only people with severe intellectual disabilities who may be driven to ‘madness’ by the deprivations of life in a closed institution.

Goffman (1966) wrote about the nature of the total institution, and about the enormous gulf between life inside and outside. People who live in a total institution do everything in the same place, under a single authority, in the company of a group of people who are all treated alike, and do things together. There are rigid schedules, with one pre-arranged activity leading to the next at an allotted time, under one ‘rational plan’. As a result of these differences between home life and institutional life, when people enter an institution, not only does their life change fundamentally, but so too do the attitudes and perspectives of other people towards them. They are at once perceived as ‘different’ and ‘other’ and, from that moment on, are ‘left out in the patterning of society’ (Douglas 1966).

Most people who were incarcerated in concentration camps in World War II were able

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to describe their experiences, unlike the men in the locked ward, who cannot speak.

Primo Levi (1987) writes about his own experiences in a German prison camp during World War II, and describes the effects that entering an institution has on individuals:

Imagine now a man who is deprived of everyone he loves, at the same time of his house, his clothes, in short, of everything he possesses: he will be a hollow man, reduced to suffering and needs, forgetful of dignity and restraint, for he who loses all often easily loses himself (Levi 1987).

And again:

For living men, the units of time have a value… but for us, hours, days, months spilled out sluggishly from the future into the past… the future stood in front of us, grey and inarticulate, like an invisible barrier. For us, history had stopped (Levi 1987).

Bettelheim suggested that the concentration camp was the gestapo’s laboratory for subjecting men ‘to the process of disintegration from their position as autonomous individuals’ (Bettelheim 1952).

Dostoevsky wrote about his experiences as a political prisoner in Russia in the 1850s and observed the powerful effects of the institution on the others around him:

Even men sentenced for their whole life were restless or miserable… This everlasting uneasiness… sometimes found involuntary utterance, at times so wild as to be almost like delirium, and what was most striking of all, often persisted in men of apparently the greatest common sense (Dostoevsky [1860] 1955).

And:

When he has lost all hope, all object in life, man often becomes a monster in his misery’ (Dostoevsky [1860] 1955).

These examples of the effects of segregation in closed institutions on people who do not have intellectual disabilities are significant. It is not surprising, perhaps, that young children with intellectual disabilities who were locked away at a very early age became restless and miserable, even, perhaps, ‘haters of mankind’, and began to give voice to wild, involuntary utterances, as Dostoevsky describes. It is clear from the accounts of other institutions that the transformation of the men in the locked ward, most of whom were institutionalised before the age of eight, into the popular stereotype of ‘mad’ people in institutions, is as much the result of 30 or 40 years incarceration in the institution, as it is of their individual disabilities and characteristics – and thus could possibly have been avoided.

People who live in institutions are conceptualized and perceived by others very differently from similar people living in the community. When people move into a mental hospital they enter a marginal state, and no longer have a place in the social system, and are perceived as both vulnerable and dangerous. People’s perceptions of them change, and they become ideologically as well as physically excluded. Moving into an institution is not simply like moving house. Interwoven with the transition are other strands of change, and at the same time there is the yielding up of the confined person’s own responsibility for themselves, not only for their own bodies, but also for their own minds.

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Once an individual has been institutionalised, for whatever reason, the stigma remains with them. Living in a total institution deprives people of their sense of identity. Is it possible to regain it? Once people have been socially and physically segregated from society, and have become desocialized, and, in the case of mental illness and disability, are perceived as unclean and polluted, how far is it possible for them to be reabsorbed into society?

Concepts of ‘dangerousness’ and pollution do not vanish overnight. The tenacity of attitudes to people in the community who have been segregated in an institution is true of all kinds of involuntary institution. Douglas, for example, wrote that ‘A man who has spent any time ‘inside’ is put permanently ‘outside’ the ordinary social system. With no rite of aggregation which can definitively assign him to a new position he remains in the margins’ (Douglas 1966).

The tenacity of negative attitudes to people in the community who have been moved out of an institution is also true of other kinds of institution.

Among the most visible groups of marginalised people have been those with leprosy, and the term ‘leper’ has become a metaphor for any person whose behaviour or moral status leads to his or her social exclusion. Leprosy is a prime example of the tenacity of negative perceptions and the resistance to more positive perceptions, even when the supposed negative aspects are removed. Hyland (2000) wrote that after a public health education programme in Nepal, which informed the population that leprosy was a medical condition which could now be cured, it had been hoped that beliefs about leprosy that resulted in social exclusion and expulsion from the village would be reduced, and that those who had suffered from leprosy would now be welcomed back into the community. But this did not happen. Hyland’s research showed that even after someone was cured, they were still perceived as ritually polluted and continued to be socially ostracized.

Similarly, it is clear from the study of the men in the locked ward, in the material from interviews with parents, that for some parents it is as though their child also died a social death when they entered the children’s hospital many years ago. This contributed to the resistance of some families to the closure of the ward, and to the opportunity for a new life for their son or daughter in the community.

Once a child, or adult, has been committed to a long-term institution, to this marginal, socially and physically excluded existence, how can they years later be brought back into society without indicting the family, the wider kinship and social group, and society as a whole?

Such a move must carry with it the uncomfortable, and perhaps for some the unbearable implication that this person was not, and thus had really never been beyond the social pale, was not too morally, emotionally or physically dangerous to be incorporated into the social group.

It was clear from the interviews that many parents, even some thirty or forty years after their child went to live in an institution, still have strong and unresolved emotions. The social death of a child may sometimes be harder than a real death. There is an

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incompleteness - there has been no burial, no closure to the mourning of the parents who let them go.

Even some of those who never visit their children mourn them still. For them there is no forgetting. One mother said that she thinks about her son every day, and has done so for thirty years. Her son is lost to her, but there is no relief from her bereavement. She has never told anyone outside the family that she has a son. It is as though he is dead, a child to remember and mourn, but not to lay to rest. She, and many other parents, opposed the closure of the institution; they would prefer that their adult children remain segregated, because the alternative, to bring them back into the social world, was too painful to contemplate. No one really wants to resurrect their dead.

Concepts of stigma and pollution are not easily thrown off by people who have lived in institutions, wherever they go next. In the 1970s the local mental institution in a small French closed down and the residents went to live with some 500 families in the area. Research carried out with these families some 20 years later revealed that, even after living so many years in the household, the majority of lodgers were kept separate from the family, and used separate entrances. In only 12% of families did the lodger eat with the family. They were given separate cutlery to use, and their washing-up was done in a separate bowl, because there was a strong belief among the families that the lodgers could pollute the water. In some households they were forbidden to touch anything in the house except in their own rooms.

Thus, in spite of twenty odd years of living under the same roof, the families continued to believe that they could be polluted by their lodgers, who had formerly been patients in the local mental institution.

What does all this mean in terms of cultural memory and cultural history?

What can be said about the cultural memory of people whose lives are controlled, interpreted and dictated by others in a deprived, segregated, socially invisible environment which defines them as beyond the pale?

What is the cultural heritage of people deemed to be totally 'other'?  

What do we mean by the ‘oral history’ of people without speech - whose oral history is it? What can be said about people who, as far as many of their families are concerned, died a social death when they were institutionalized in early childhood?

Various factors contribute to the absence of any social identity for the men in the locked ward, and thereby obviate any likelihood of an oral history or cultural memory that reflects their own lives. They are physically and socially segregated and have become socially invisible. Their pasts are not acknowledged and they are not thought of as having memories or emotions, or even, in many cases, any sense of physical pain.

Since the men are almost totally silent they cannot present their own personal histories, nor express their thoughts. To a great extent their cultural history is merely the history of the institution. Their individual lives, as opposed to their medical and recorded behavioural lives, are to all extents and purposes unrecorded. One dies or is moved out and another man takes his place.

There are oral histories of individuals who have lived in institutions, but by definition

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they are people who can talk, or even write. Other people can write histories of institutions, but the result is their voice, not the voices of those who have lived there.

The men I have been talking about have now been moved out of the old hospital ward, as part of the policy to close the big institutions. They live in smaller homes, where their lives are materially better, and they are treated more as individuals, but they remain segregated and locked away. There is evidence that attitudes towards them by people in the community around them have not fundamentally changed. Thus they remain socially invisible and when they die they will cease to exist in public memory.

Concepts of ‘dangerousness’, and of pollution do not vanish overnight. The men still carry with them a legacy of separateness and stigma, reinforced by the continuing perceptions of them as ‘other’, defined, as Young said, as ‘ugly, dirty, defiled, impure, contaminated and sick’.

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