As if they wished to assert a cultural singularity, the French continue to use the English word “handicap” – widely criticized and deemed to be politically incorrect elsewhere – to designate different disabilities of a physical, mental or social nature. Stiker (1999) has traced the origin of the use of this term in the area of rehabilitation after the First World War. As a category of Welfare State intervention, this notion was introduced during the post-Second World War boom period to refer to the problems of social regulation raised by impairments and disabilities within the context of national solidarity, in situations where such questions had previously been approached in terms of physical or mental distress within the framework of national solidarity; prior to that, such questions had been examined in terms of physical or moral distress, and related to private modalities of charity. In 2005, French authorities gave handicap a legal definition.
Although political uses of the notion of handicap can be easily dated, it is far harder to pinpoint the emergence of the term in everyday language to designate the disabilities and impairments which affect certain individuals. According to Stiker, “certain extremely rare uses [of the term handicap] to designate the status of invalids coincide [in literature on the subject] in the 1920s and 1930s, but it was not until the 1950s and above all the 1960s that it became truly commonplace and dominant, and as from 1965, invasive” (Stiker 2000:35). Common use of the term handicap thus developed at the same time as the reduction in debilitating pathologies such as poliomyelitis and the eradication of illnesses such as tuberculosis, which had been a public concern until the end of the 1950s. The notion tended to develop with the introduction of a framework for public intervention, in the place of notions now deemed to be incorrect or outdated, such as infirmity, idiocy, debility and retardation. It came into more general use with normalization policies for the condition of handicapped persons and policies for integration into social life which led to situations of encountering normal people. It was then able to group together representations of impairment and disability.
This article examines the representations of handicap which emerged from these encounters in everyday life. It looks at their variations and tries to explain them in accordance with different modes of social organization. It therefore differs from the study of social representations developed by social psychologists. In the tradition of Moscovici's works, this approach favours the cognitive dimension of the representations; it does not pay much attention to their dimension of aptitude for action, i.e. their implications in the organization and unfolding of relationships. By looking at the relationship between representations and action, the approach discussed in this article takes up the analysis of collective representations developed by Durkheim (1995) and Durkheim & Mauss (1963). In their trial on primitive classifications, they highlighted the social origin of the classifications and of the relationships between groups which are at the roots of cognition. It is these social roots of representations that we wish to study.
The article is based on the work of anthropologist Mary Douglas, who revived Durkheim's approach through thinking about the variability of cultures by comparing it to the variations in forms of social organization (Douglas, 1978, 1982, 1986, Thompson, Ellis & Wildavsky 1990, Calvez 2006). She developed a social-accounting approach to culture, which she qualified as cultural analysis. She started with the social frameworks which orientate the action of individuals and which constitute contexts of action for them. Where sociologists ordinarily compared two types of social organization – Gemeinschaft and Gesellschaft, to use Tönnies’ categories (1963) – she suggested distinguishing between four categories by contrasting two dimensions, individuation (the organization of social roles), which she called grid, and social incorporation (types of social participation), which she called group. Further to the two types of organization mentioned above, which she respectively qualified as hierarchical and individualist, her typology identified two other forms of organization, which she called egalitarian and socially subordinate. The first is based on membership of a group without any joint agreement on the respective roles of each member, unlike Gemeinschaft; it is similar to the form of organization that Schmalenbach (1977) called Bund. The second is characterized by the assignation of social roles without the benefit of belonging. In The Weight of the World, Bourdieu (1999) analysed the type of experience and possibility for action which originates in this type of organization. To each form of social organization, there are corresponding principles and values which make up what Durkheim calls the collective conscience and which express the prevailing conception of social order. For Mary Douglas, these principles and values constitute the framework of all cultures. Individuals use them in order to conduct themselves in accordance with the modalities recognized by the type of organization within which they act, in order to assess how others are conducting themselves and in order to justify their own conduct in other people's eyes. The use of these principles generates bias in the representations that individuals develop from the situations in which they find themselves, by linking them to the social principles in which they believe.
Cultural analysis serves as a basis for an approach to handicap as a representation of impairment and disability. Instead of sticking to cognitive content, the objective is to link these representations to the manufacture of social order, i.e. to show how they originate in the ways in which social relationships are organized and how they help create these relationships. Implementation of this perspective means one must place oneself at a level of microsociological analysis in order to observe how, within everyday life encounters, people develop representations in accordance with the social principles to which they are attached, and how these representations orientate and justify relationships with handicapped people.
In the first part of this article I will set out the area of research and explain in what way it is useful for this analysis. I will then give a few examples to show the extent to which representations of handicap vary during everyday encounters. I will show how these representations originate in the principles to which people refer when organizing their relationships with others. The typology of social organization suggested by Mary Douglas will allow an increased generality that shows how representations of handicap reply to issues of affirmation of a social nature, which come about in different ways depending on the types of organization.
Throughout this article I will use the terms “handicap” and “mentally handicapped” even though I am fully aware that this is not the currently accepted terminology. In a similar fashion I will use the notions of “representations of handicap” and “handicap as representation” to stress that handicap is a category of classification and not a biological or psychic reality. This decision to use the notion of “handicap”, strongly criticized elsewhere, originates in the desire to be closer to social and cultural realities in which these terms are common currency, and to bring out both the specificity and the approximation of the categories which are used. This French exoticism also allows us to say that, above and beyond the signifier, be it qualified as handicap or disability, it is the signified that need to be examined, and, for my purposes, their roots in social life. Like Alice, we need to go through to the other side of the looking glass of words and get away from the image that they reflect of ourselves.
The Utility of Tréguier for Research into Handicap
The fieldwork upon which this article is based took place between 1988 and 1990 in Tréguier, a small city of 2,500 inhabitants in the north of Brittany. I wanted to take another look at this work, because I felt it was the best suited to support the notion of handicap as a cultural category that I wished to develop on the basis of Mary Douglas’ theory (Calvez 1993, 1994, 2001). The purpose of this section is to show how this fieldwork can help us to make a cultural analysis of representations of handicap.
The choice of a local study in Tréguier stems from the fact that, as from 1977, people labelled as handicapped, and who had until then been kept in a special institution, began to live in the town in ordinary accommodation whilst also working in a sheltered workshop and benefiting from follow-up – albeit sometimes half-hearted – from special educators. This situation was not the result of any clearly defined and properly implemented mainstreaming policy. It was the fruit of circumstances, of a lack of places in closed institutions at a time when educators were looking for alternatives to confinement. It gradually became one of the solutions for local management of mental impairment.
This situation muddied the boundaries between the world of handicap and the normal world. Certain people who had until then lived in special institutions were taking part in ordinary life. This situation blurred both the territorial and social segmentations upon which representations of mental handicap had until then been founded. Whilst normal and abnormal related to distinct and separate places, with possibilities of the two meeting being restricted and controlled, the presence of the mentally handicapped in the heart of social life called into question the tacit distinctions between the handicapped and normal people, and the distance and avoidance which had previously prevailed. Collective representations of mental handicap were no longer backed by the radical separation of the special world from the normal world; they had to be rebuilt. A local study made it possible to see how normal people coped with these situations in everyday life, what principles they put forward to justify their conduct and what representations of handicap they developed.
Above and beyond these immediate circumstances, Tréguier had the advantage of being a community in which helping the poor and the oppressed was a major part of the culture. This went back to the end of the 13th century, when the city, still a bishopric, was the home of one of the great Breton saints, Saint Yves. Patron of lawyers, protector of the weak and the poor, after his death he quickly became a cult figure, a focal point for a tradition of hospitality and charity towards the impoverished. This tradition was expressed in charities of which the institutions for the mentally handicapped are the modern heirs. In his “Recollections of My Youth”, Renan talks of the 1830s during which:
The insane were not treated with the cruelty which has since been imported into the conduct of asylums. So far from being sequestered, they were allowed to wander about all the day long. There is as a rule a good deal of insanity at Treguier… These harmless lunatics, whose insanity differed very much in degree, were looked upon as part and parcel of the town, and people spoke about our “lunatics” just as at Venice people said “nostre carampane” (Renan 1897).
Despite the obvious discontinuities between the hospital tradition of the Ancien Régime and modern care for the mentally handicapped, Tréguier nevertheless offers the advantage of having a cultural framework of reference which can make sense of and justify the normal life of certain mentally handicapped people. This is expressed in a joint opinion which echoes Renan's recollections:
It's better for the handicapped to be in town than to be locked up. They are kind, they don't make any noise. They are like everyone else. When they can get by on their own, there's no need to lock them up. They can learn and live like everyone else.
This opinion is supported by a duty to be charitable which old people express with regard to the beggars and retarded people who lived locally. Talking to me about one such person that she remembered from her childhood, Renan's great niece said:
He was basically a handicapped person … He lived off charity; but you see, we felt it was normal to give to such people.
As with every community account, the cultural account of the duty to be charitable is sufficiently flexible to allow its members to refer to it in accordance with individual's guiding principles. It is used in a different manner by normal people to make sense of encounters with those who used to live in special institutions, depending on the conceptions of social order that they defend. The representations of handicap that result from situations of encounter thus show variations which can be related to these principles of organization.
Moving from a cultural account, which expresses the overall consensus of a community, to variations of representations, requires not considering the local community as a whole, but as a combination of relational contexts set in time and space. The fieldwork focused essentially on the relational contexts constituted by relationships between neighbours. When people share the same space they have opportunities to meet, which bring into play various types of interaction (cooperation, conflict, avoidance, ignorance). In what they say, in what they do together, in what they ask of one another, they implicitly rely upon social rules and principles that allow them to justify these rules. They thus call upon relationship models that mobilize the conception of social order to which they adhere.
Ordinarily, the routine of relationships allows them to have dealings with one another without worrying about the rules governing their encounters, something that Berger and Luckman (1966) qualify as non-problematic sectors of social life. Certain situations cause problems because they are unusual or unexpected, falling outside routine. They require an objectivation of the principles upon which individuals organized and justified their relationships with others. Some interactions between handicapped people and normal people in the neighbourhood pertain to these problematic sectors of social life, inasmuch as, given their respective histories, they have different expectations regarding how the interactions would occur. Yet the relationship is not symmetrical, as normal people refer to an established mode of life to formulate and justify their demands people who come from the special institution. The central object of this study is this mobilization of social principles with which to organize neighbourhood relationships with the former inmates.
A Climate of Benevolence and a Marking of Difference
The presence in Tréguier of former inmates in a special institution was not insignificant. Quantitatively, it meant that there were 50 or so people living in houses or flats located in two parts of the city. Daily routine meant that the sheltered workshop where they were employed closed at 17:00; so they would be seen arriving as a group at the square in the city centre. They were identified and qualified as a category of persons whose specificity came from their institutional affiliation, as the following extracts from interviews show:
I know them by sight, because even if I'm not looking to get to know people, I know who they are… They are people who have a slight mental handicap. Their handicap doesn't stop them from living in a town, doesn't mean they have to live in an institution… I can spot who they are, it's possible, even if it's subjective, there's something visible. To do with body attitude, you can tell.
You can tell from the way they dress, their faces too, the way they talk, you can tell as soon as you see them.
They are not really ill. You can see that they are not really like other people. They don't have serious problems. But you can tell when you see them. The way they walk, you can tell a bit, and their faces.
Normal people associate the former inmates with the special institution. The representations of handicap that they develop are founded in the situation that this institution had created. The fact of living in town is associated with a slight mental handicap, a capacity to be autonomous, an absence of danger for other people. This therefore leads to a series of joint representations which allow ordinary people to associate mental handicap with the presence of the former inmates in town, without having to call the normal order of things into question. The boundary between normal and abnormal moves in accordance with the choices of the special institution. People suppose that the mentally handicapped who are the “most seriously ill” or the “most dangerous” remain confined. They build up a representation of former inmates as people who are different, as demonstrated by their former status, but not dangerous – unlike those who remain confined.
These representations, which focus on institutional marking, are based on a distance from a group of people associated with the special institution. This general marking of the statutory difference is found in occasional interactions. The representations are therefore approximate, or even contradictory, reflecting the difficulty of combining the label of handicap given to the former inmates with their presence in a normal milieu:
You can tell from their faces, their eyes, something. It's hard to say, but I'd know from their faces. Two from here came to see me, and I was amazed by the conversation they were able to have, the way they spoke, calm and clear.
They've been well accepted… They have the right to live [in town] if they're not a danger to other people. They need to do their shopping, have a coffee. But I don't know if they are aware of it. Even if they know that they are handicapped, they don't know that we know. If it's a mental handicap, I don't think they know they are handicapped. As far as they are concerned, they are normal; they are in their own little world.
What marks their difference and justifies maintaining contact with the special institution is the absence of reflexive conscience, which means they do not know what the reciprocity of exchange is, nor what it means to meet the obligations of a social life. So they can live in town, but because they are unable to give a sense to their conduct, they cannot have any social exchange other than that relating to the routines of everyday life.
The interviews, carried out locally, thus reveal representations of handicap structured around the marking of a difference. They are based upon the situation created by the moving of the boundary between the normal world and the world of handicap. They make up for a lack of significations by calling upon accounts relating to the representation of confinement, idiocy, the effects of alcoholism, which developed throughout history, and by adapting these accounts to the situation created by the fact that former inmates were living in town.
These representations nevertheless depend upon the conditions of the study in which they are made. By asking people about “the handicapped”, taken as a specific group in the town, the researcher introduces a specific category which immediately marks the difference and which orientates what people say. He/she hears general accounts which portray an average state of the beliefs and representations relating to handicap, but which say nothing about the effective development of the relationships and the significations they are given.
The Representations of Handicap in the Neighbourhood
In order to get to the other side of the general representations of handicap and access the categories that people use to regulate their relationships in everyday life, I examined the relationships within the neighbourhood. I asked myself how people act during encounters and exchanges with people who they otherwise consider to be different, and how they explain and justify their actions. This objective involves carrying out fieldwork which is based on a common condition, in this case the fact of being neighbours who share the same space, and which looks at the categories of neighbourhood that people develop and at the reasons they give for these categories. These representations, once they have been established by the fieldwork, can be compared with the institutional career of the people in order to see how these categories mutually feed or reject each other. This process of working on all of the neighbourhood relationships is unwieldy, especially as it was used in three parts of the town and the surrounding area. Its main advantage is that it avoids the pitfall of a disembodied approach to representations, positioning itself instead at the level of the connections between what people say and what they do.
During the field interviews, the relationships between the handicapped and the normal people seemed to be a major concern, but not necessarily in the way that we expected. For example, an elderly lady complained about her neighbours who were making noise late at night, and said she thought this was because “they were mentally handicapped”. When we checked, her neighbour was in fact an educator who worked in the special institution. This is an interesting anecdote, because this lady, who had little contact with other people, was using a common representation of handicapped people to justify her criticism of people she knew nothing about. During interviews on a housing estate, someone known to be a former inmate was accused of unseemly behaviour with regard to a 10-year-old girl. These accusations, which mobilized a representation linking handicap with sexual danger, were called into question by other people on the housing estate and were denied by the parents of the girl in question, who stressed the beneficial aspect of the former inmates living in town. In this case the presence of a handicapped person is caught up in the issues of how the neighbourhood relationships are defined and organized; it is important to consider the representations of handicap in terms of these issues. Elsewhere, in a rural hamlet where I knew former inmates to be living, their identification with the world of handicap was non-existent. In a context where the habitation was spread out and where frequent encounters were not obligatory, this was explained by the ability of the former inmates to fit into an established role, that of a discreet young couple working in town and taking care of their garden. Without forgetting these routine situations, the research mainly focused on problematic relationships, for this is where the people involved call, more or less implicitly, upon conceptions of social order and of the relationships which should result. This is where they mobilize representations of handicap to orientate the demands they make of former inmates, to justify their opinions and their actions.
I will give a few contrasting examples to show the way in which representations of handicap emerge from neighbourhood relationships. The first concerns a shopkeeper (who has since died) who was the first to lodge inmates in rooms that she rented above her shop. When she was contacted by an educator to lodge a handicapped couple, her concerns were for the damage that they might do, especially damage by fire because it was an old wooden building and the inhabitants were worried about fire more than anything else. Her concerns evaporated when the therapist guaranteed that the couple would be monitored. As she held a central role in the neighbourhood network, her acceptance encouraged others to agree to this type of lodging:
I gave preference to the handicapped. Sometimes they made some noise or caused some damage, but they always paid for it. I had nothing to complain about. When one of them left, [the educators] came to tell me. They always paid their rent… They are nice honest people. No-one ever stole anything. There was one woman, she tore the wallpaper; I had no reason to complain because I was reimbursed. When another woman left, they paid the remaining two weeks of rent… Hélène, the one who tore the wallpaper, she was nice. She left because she liked a change every now and then. But she remained on good terms with us. She must have been angry when she tore the wallpaper… There are people who stress their differences from the handicapped. But they are human beings like the rest of us. We like to help. They were nice to us, we were nice to them.
Whilst the conducts mentioned by this shopkeeper might serve as justification for criticism, or as justification for their difference, they are interpreted in a benevolent manner. It is the honesty of the former inmates that is stressed, in contrast to the common judgement of others. This representation is based on the guarantee provided by the special institution, but it also mobilizes a conception of social relationships in which there is a duty to be charitable to those in need. It is because the handicapped are considered to be in a situation of need that the shopkeeper goes beyond the obligations of renting, that she excuses the atypical conduct and that she describes her charitable action as being part of what she feels to be the normal order of relationships.
This response can be contrasted with that which is used by estate agents in the rental business, who consider former inmates in terms of the categories expected within their business activity: propriety and personal responsibility. A general principle is affirmed:
I think they should be accepted as long as they behave properly… By behaving properly, I mean that I don't hear of any problems, no noise, that everything goes smoothly, that they are clean and tidy.
These principles are put to the test in the concrete modalities of flat rental. When atypical conduct occurred it was felt that a reminder of the rules would reduce or eliminate the problem.
One day, François was cleaning his vacuum cleaner by emptying it out of the window. Another time there was a flowerpot which fell into the street. Two weeks later the earth still hadn't been cleaned up. I told him: “François, you haven't cleared it up”, he said: “It wasn't me” and I said: “But come on, you're the only one with flowerpots.” … When they arrived in the flat they used to put their rubbish bins in the corridor, where they stayed for two weeks. When they were full, they put them in the loft. But that was just at the start, they didn't know when the bins had to be emptied.”
The incidents which occur are interpreted through the looking glass of the experience in a special institution, and are seen as peculiar behaviour which can be corrected by learning rules and following recommendations. They are minimized, or even excused, as long as they remain within the bounds of acceptable conduct and as long as they do not have an adverse effect on the rental activity. For example, if a fire is started, this would lead to the expulsion of the tenant and the owner's refusal to ever rent to former inmates again. It is not the benevolence or the duty to be charitable that are called into question, but the limits within which they can be exercised.
The fact of having a professional activity guides the representations of the former inmates. The very same estate agent thus assesses people in terms of the time she has available:
In this case, the way in which relationships develop depends on interpersonal adjustments.
I think they are people who require a great deal of time and attention. One of them comes here every evening to talk about music. I told my colleague to beware of him, and I told him “okay, if you want, but outside of office opening times.” Because otherwise he'd stay for hours… But they are people who are very sensitive; you can tell that they are sensitive because they sulk very easily.
In a recently completed council housing estate, on which there are former inmates as well as families with low incomes or with socio-economic difficulties, the representations are just as contrasted. The oldest adults put forward a representation of former inmates as children in adults’ bodies:
Handicapped people are big kids. Sometimes they have to be told off like children… They laugh or sing for no reason, they talk to themselves. It's natural. That's what it is to be a child. They are adults and children at the same time. They have no complexes… People don't realize that they are children, well, not really children, but a child's brain in an adult's body.
This adult viewpoint generates real concerns about the capacity of former inmates to look after themselves. The lack of confidence is maintained through the friction between their representation as children and the autonomous life conditions in which they find themselves. It feeds perceptions of unpredictable behaviours that the familiarity from living in close proximity cannot totally remove:
When they are around, there are days when I can't relax. We're afraid of a fire, you can never be sure. The other day we smelled gas coming from the young man's flat downstairs. I asked him if he'd turned the gas off properly … In fact, there's some of them I wouldn't trust. One day one of them asked me to come round. When I arrived she had locked the door.
It's true that at first I was scared when I arrived on the estate, I didn't know what they were going to do… One of them, when she bought a motorbike, she came round to show it to me, and her little cat too, she told me a bit about herself. They need to see people other than people like themselves. She's a bit like a little girl.
Those who consider former inmates to be children think it is normal that the educators look after them. But other people just see them as privileged people who are better off than they are. This contrast in representations was very clear on the estate where a few former inmates had been given flats. It related relatively narrowly to differences in lifestyles and trajectories, between established couples with teenage children, and younger couples with younger children, and who, in this region suffering from unemployment, had real problems finding jobs:
Handicapped people don't make any effort to be accepted. They shut themselves away among themselves, spend too much time together, it's not good for them, they can't become part of the community. It would be good if they could, but they receive too much help … They've got [TV] channels 5 and 6. They have someone to come and do their gardens, their lawns are mown and kept tidy. It's not normal. I think they are capable of tidying up themselves … At first we thought it was a good thing. But it's over the top. It doesn't bother us, we're just thinking of them.
They are people who need to be with people like themselves; it's like with people of a different race … They like to stay together, but they are well accepted … They need to be able to live like other people, do their housework, that will help them. I'm not criticizing, it's good that they live with us, it's not their fault.
The process for comparing the respective disadvantages highlights the supposedly best life conditions for the former inmates, who continue to get support from the special institution. The principle of positive benevolence with regard to the handicapped is linked to the affirmation of an insurmountable difference from the normal human condition. The alterity which is built in a situation contains the beginnings of logics of exclusion, similar to those analysed by Elias and Scotson (1994). All that is needed is an incident, real or supposed, for the neighbours’ demands for exclusion to be formulated, as was the case for the above-mentioned accusation of indecent behaviour. Accusations of danger (“You don't know what's going on in their heads”) and of depravation (“They have strange parties, they do strange things together”) thus find favourable ground, not only to be expressed, but more importantly to be deemed credible.
Encounters with the former inmates led normal people to select and consider various arguments to make sense of situations that differ from the routines and expectations of relationships in everyday life. Within a given cultural account of benevolence towards handicapped people, the representations of handicap see major variations which originate in the principles that normal people mobilize to organize and make sense of such relationships. In my opinion, it is not particularly useful to know whether these representations exist in a latent state in the local cultural repertory, because what requires the researcher's attention is their mobilization to organize the relationships and the conditions which make them credible in the eyes of the population. It is through these exchanges that they become accessible to sociological analysis.
The Diversity of Representations and Neighbourhood Contexts
In order to give a sociological meaning to this diversity of representations, we need to relate them to the principles that people mobilize to organize their neighbourhood relationships. The neighbourhood can be analysed as a collective reality in terms of the two dimensions in accordance with which cultural analysis characterizes social contexts, i.e. group or the modalities of affiliation and grid or the organization of social roles. These dimensions generate constraints which can be used to consider handicap as representation.
In a neighbourhood in which affiliation requires the participation of individuals in a group, and where the group is defined by collective rules that restrict individual significance, disabilities can be accepted as long as they do not call the group into question, and as long as the group accepts them as a collective heritage. This is why the explanations of disabilities are determining factors, because they define collective responsibilities towards individuals. In Tréguier, lay nosography makes the distinction between major impairments and slight impairments. The former are caused by the parents being alcoholic; they are an attribute of very poor people; social opinion leads to the impaired being locked up and to collective responsibility being given over to specialists. Slight impairments are randomly explained; they are an attribute of respectable families in the city. Having no reason to use these impairments to blame families, the group can be compassionate towards them. The fact that they live in a normal milieu, and even that they can be living as a couple, is therefore given a positive spin as an apprenticeship of social life and as an opportunity to improve their situation. Yet by referring to convictions concerning the hereditary transmission of defects, the possibility of procreation among the former inmates living in the town is criticized, as it calls into question the notion of a random origin of impairments.
The difference between a neighbourhood group which bases itself on differentiated statuses, and a group which believes in equal condition, is the existence of categories allowing one to take into account a range of individual behaviours. In an egalitarian neighbourhood, as long as an individual participates in the group to the same extent as the others, and meets the requirements that the others express, he/she is perceived to be the same as the other members of the group with regard to identity of condition. As soon as a difference in behaviour or an incompetence becomes explicit, it is put down to the person having been an inmate. If this difference expresses something that the group has experienced, such as domination by people more powerful, the group might feel sorry for the individual, seeing him/her as a victim. On the other hand, if the person's incompetence is seen as a threat to the group, he/she may be deemed to be at fault – bad or dangerous – and be partially or totally rejected. This institution of former inmate as scapegoat allows us to bring together individuals who are unable to stabilize their relationships. Other people can also be placed in this situation of scapegoat; this was the case of a single person who was an alcoholic, who was accused of having AIDS at the time when we were just beginning to learn about the illness and when it was locally believed to be contagious. The libel of which these people were the victims must be plausible in the group's eyes; the reference to handicap and its association with uncertainties regarding behaviour or sexual dangers thus becomes essential in order to justify this exclusion.
In a neighbourhood group characterized by different hierarchical statuses – for example, based on age and social rank – the existence of several classes of individuals allows one to allocate a status to former inmates as long as an analogy or equivalence is recognized between these persons and one of the existing classes. In the heritage of traditions associated with Saint Yves, handicapped people can be compared to children or to the poor, towards whom there is a duty to protect and to be charitable. There is thus a frame of reference with which to relate former inmates to a generational or social stratification. In the case of stratification by age, the equivalences are fragile, as can be seen in the representations of former inmates (“a child's brain in an adult's body”), as they generate hybrid categories, whereas analogies with the poor and the destitute create fewer problems of category coherency and plausibility. It is mainly through asymmetrical relationships that these places are allocated to former inmates. In this way they do not have to satisfy the obligations of exchange and reciprocity which prevail among equals. Their neighbours give them many things and exercise discreet control over them; in return, they expect the former inmates to keep to the places they have been given. They are then considered to have merit, due to or despite their handicap. Their sometimes inappropriate behaviour can be tolerated as lapses and they can be excused because they have no education. Neighbourhood relationships tend to maintain the pecking order that they impose.
Just like in a business relationship, in a neighbourhood which promotes individual interest, the impairment or incompetence denoted by the status of handicap are not tolerated, because they defy the principle of autonomy and self-achievement. This is expressed in social pressures to ensure that former inmates are monitored by specialists and that they have limited access to the normal world so that their presence does not interfere with normal relationships. They can rent flats in town as long as they are monitored by educators who ensure that they are doing no damage, that they are not disturbing the neighbours, and that the rent is paid on time. These prerequisites for good behaviour are also applied to normal tenants; unlike the latter, the former inmates are immediately considered to be unable to fulfil them. In relationships based on individual interest, the former inmates thus take on the status of “dominated”, which is justified by their history in a special institution. Aside from monetary exchange, this position leads to limited communication and to condescending attitudes which mark a radical difference. This situation of domination is justified by their inability to act in an autonomous manner in accordance with the existing rules.
In a neighbourhood marked by isolation and social subordination, responses are changeable. Commiseration with former inmates marked by a difficult life and misfortune might be followed by criticisms of the social privileges that they are granted. Individuals who act in this context have no particular stakes to defend and tend to compare their situations with those of other people in situations of need. The criticism of others allows them to formulate demands for aid and concern which they would not otherwise be able to express. Relationships in everyday life lead to behaviour somewhere between defiance, jealousy and compassion. The demands made of the former inmates do not set them a stable horizon from which they can orientate their action. When several people are sharing the same condition of subordination, they can make a former inmate the scapegoat for their unfortunate condition. As long as they remain isolated, their recriminations have no consequences beyond personal interactions.
The responses provided by the different contexts of neighbourhood lead to an allocation of social places and status specific to the people labelled as former inmates of special institutions. An individualist neighbourhood gives them a partial status. They are classified in accordance with their capacity to contribute to economic and social exchanges. This status goes along with demands of control of aspects of their lives which cannot be regulated by ordinary exchanges (e.g. sexuality, leisure, etc.). A neighbourhood with a hierarchy of statuses gives them a status which is based upon the analogy between the classifications of impairment and the recognized statutory categories. This allocation of a minor or dominated status is accompanied by an asymmetry between their rights and their duties in relation to the group. In an egalitarian neighbourhood, the allocated status is ambivalent. When similarity of condition is taken into account, there is an expectation that the same status will be shared. When this expectation is not satisfied, there is rejection outside the group. When behaviour which is not in keeping with the group is perceived as a threat, the rest of the group wants the former inmates to be controlled by the institution with which they are once again identified. In a neighbourhood of subordination, the rejection is atomized. In both cases the former inmate personifies adversity. His/her presence in the normal world generates uncertainties that the principles at the root of the relationships cannot contain.
These responses, very different from one another, do not provide the former inmates with a stable and explicit framework of reference that they can use as a basis from which to act in the normal world. Furthermore, their socialization in a special institution did not give them the cultural resources that would have allowed them to process the contradictory demands that would be made of them in everyday relationships. The most reasonable solution available to them is to reduce their life outside the institution to well-controlled routines, and to withdraw from areas of social life that they are incapable of controlling. The withdrawal which is an adapted response to the various demands that they are unable to meet then becomes, in the eyes of normal people, a mark of their incompetence and a reminder of their former status of inmate.
An Empirical Paradigm for the Construction of Handicap
By taking into consideration the multiple practices that a more incorporated level of social life does not allow one to perceive, local analysis allows one to unfold the process of building handicap as a representation of disabilities and impairments. Above and beyond its singular contribution, this ethnography can be used to build an analysis of a more general scope, which makes it an empirical paradigm in the sense of Elias:
On a small scale, we can build an explanatory model for the configuration that we believe to be universal: a model ready to be tested, extended and, where needed, revised in the light of other studies relating to representations on a larger scale. In this sense, the resulting model can serve as an “empirical paradigm”. By using it to assess more complex representations, we gain a better idea of the structural characteristics that they have in common and the reasons for which, in other conditions, they function and develop along different lines (Elias & Scotson 1994:45).
The study of neighbourhoods has allowed us to link representations of handicap with forms of social organization, by showing in what way these representations help develop social order. The following table summarizes the principles behind these representations, in accordance with three main dimensions:
- 1. the social perception of impairment;
- 2. taking impairment into account in the relational context; and
- 3. the characteristics of the status accorded to the former inmates.
|Ascribed role||B. Social subordination||C. Community hierarchy|
|1. Impairment is seen as a person's attribute, and a matter for commiseration or jealousy.||1. Impairment is considered in relation to existing statuses. It is taken into account if it does not call the group into question and if it can be related to a recognized status.|
|2. Impairment is assessed in terms of the comparative advantages it confers.||2. There is a collective responsibility regarding impairments which are related to the group.|
|3. Recognition of an identity of individual condition or statutory degradation occurs.||3. There is attribution of a status and definition of rights and duties relating to that status.|
|Achieved role||A. Individualist||D. Egalitarian|
|1. Impairment is defined as an unequal capacity which might threaten inter-individual transactions.||1. Impairment is an attack on inequality within the group. It can be a cause of collective mobilization.|
|2. Impairment is treated as a partial incompetence.||2. There is a demand for participation identical to that of the other group members.|
|3. In the case of a perturbation of the social status quo, demands for professionals to exercise control are made.||3. People are accepted on an egalitarian basis or rejected as a threat to the group if they do not meet requirements.|
What cultural analysis does is to distinguish between four typical modalities of constructing handicap and to relate them to different ways of organizing social relationships. Far from being a mere static typology, this model allows us to explain the changes in the representations and practices relating to handicap as movements on the diagram which originate in transformations in social contexts within which individuals and groups act, or within their cultural frameworks. These transformations are subject to constraints that stem from the social structure and from the opportunities they give to individuals to change. They depend on constraints rooted in culture and in its flexibility to integrate new categories and situations. They are also subject to internal constraints: the move from a hierarchical conception to an individualist conception of handicap therefore supposes an unstable, egalitarian or isolated stage. This model therefore has a heuristic potential to explain transformations in relationships to impairment and disability.
It therefore seems to me that the model built within the context of cultural analysis on the basis of an ethnography of neighbourhood relationships, enables a rise in generality to explain the reasoning that governs social relationships with impairment and its expression in categories such as handicap and disability. More than a simple theory, cultural analysis is a sociological method, to take Durkheim's meaning (1982), which allows us to link social debates to the issues of building social order. The model enables us to group and converge apparently opposite or contradictory analyses of responses to disabilities by examining the type of social order to which they refer, i.e. by putting research into its social context and into the constraints and opportunities that it creates.