Introduction
No one will be surprised that care workers are concerned about cleanliness and hygiene, especially not with the pandemic fresh in mind. However, cleanliness—and its counterpart, impurity—also have symbolic meanings. According to Douglas (1966: 2), dirt is essentially disorder, or ‘matter out of place’. Socks may be clean but become dirt when placed on the kitchen table. The same can apply to people: ‘Every order’, Bauman (2004: 5) argues, ‘casts some parts of the extant population as “out of place”, “unfit” or “undesirable”’.
Disabled people have probably always been regarded as ‘unfit’ and ‘out of order’, and have been subject to shifting systems of ordering. Considering people with intellectual disabilities, typically classified with ‘a disorder’, their history of classification goes back a long way. Foucault (1965) describes how the ‘insane’ were ‘identified’ among the poor who entered the Hôpital général de Paris during the ‘great confinement’ in the seventeenth and eighteenth centuries. Over time, he says, ‘There must have formed, silently and doubtless over the course of many years, a social sensibility … that suddenly isolated the category destined to populate the places of confinement’ (Foucault 1965: 56–57). It was within this ‘destined’ population of the ‘insane’ that Itard and Seguin subsequently ‘identified’ the ‘idiot’, who during the nineteenth and twentieth centuries became subject to further classification and more specialised confinement. Over the course of a century or so, these people assume an ‘institutional identity’ (Järvinen & Mik-Meyer 2003) of intellectually disabled; that is, an identity shaped by the help, control, and treatment services by which they were enveloped.
In the latter part of the twentieth century, the classifications and confinement of people with intellectual disabilities became subject to increasing criticism. Fuelled by ideologies of normalisation and inclusion, institutions for people with intellectual disabilities were gradually closed down in many countries and replaced by more individualised housing in the local community. In the Scandinavian countries, which were pioneering in this respect, this approach has significantly improved the living conditions for people with intellectual disabilities, but it has also challenged traditional classifications and perhaps created fertile ground for subtler practices of ordering.
This paper aims to explore aspects of the relationship between residents and staff in a small group home for people diagnosed with severe intellectual disability in Norway, with an emphasis on the symbolic resources the staff use to maintain a sense of classificatory order. The paper is based on fieldwork conducted by the first author in connection with her doctoral studies (Henriksen 2022). An early emerging theme, yet not utilised in the thesis, was dirt. Although the group home had the stamp of close and caring relationships, impurity and contagion were strongly represented, often in ambiguous or contradictory ways, pointing towards more symbolic meanings. In this article, we explore these representations of dirt and the ways they may be linked to residents’ status as intellectually disabled.
After a short description of the context (i.e. the conditions and current policies for people with intellectual disabilities in Norway), we explain the empirical, methodological, and theoretical basis for the analysis. Then, we present our analysis of the ways in which dirt and pollution are represented in the group home. The theoretical discussion is successively linked to the findings that are presented, before linking back, in a concluding discussion, to the political context in which the group home is embedded.
A pioneer in decay
Norway was among the very first Western countries to close all of its institutions for people with intellectual disabilities. Through a state-led reform (1991–1996), all institutions were closed and the residents moved to new housing in their original home municipalities or the municipality of their choice. Some received independent housing, but the vast majority moved into what Tøssebro et al. (2012: 138) call ‘second generation’ group homes; that is, ‘staffed houses that accommodate 3–4 residents with each person having a private living area, comprising kitchen, sitting room, bedroom, and bathroom’. The reform was guided by an ideology of normalisation and integration and a goal of equalisation of living conditions (Meld. St. nr. 67 (1986–87)).
In addition, strong ideological pressure throughout the reform period helped to maintain positive development in the first years following the reform. However, since the turn of the millennium, the ideological pressure has gradually faded, allowing a return to more congregated forms of community care. Whereas the group homes built during the reform period had an average of 3.8 residents, the group homes built after the turn of the millennium have more than nine residents on average (Tøssebro & Wendelborg 2022). Some homes have 25 residents or more, and are thus larger than some of the institutions that were closed during the reform. The old institutions may be gone, but the institutional identity of intellectual disability seems to endure (Sandvin 2014).
Methods
The paper is based on fieldwork in a Norwegian group home for people diagnosed with severe intellectual disability, conducted by the first author in 2018 and 2019. The basis for the analysis is field notes from 286 hours of participant observation. The participants were two (out of four) residents, both male, living in the group home, and 13 staff members providing daily care for the residents. The two participating residents, here called Frank and Peter, were 50 and 70 years old, respectively, both with limited verbal language.
The fieldwork was part of a larger ethnographic study, employing an abductive research strategy (Blaikie 2010). The first author alternated between being in the field and dedicating days to analysis on a weekly basis. A year later, in 2019, she also revisited the group home. To build understanding of everyday life in the group home, the first period of participant observation began with broad and descriptive observations (cf. Spradley 1980). The first author aimed to observe and write down as much as possible, including that which was not immediately relevant to the research questions, among which was the theme ‘dirt’. At first, the issue of dirt was just disturbing. Upon discovering the inconsistency in the staff’s relationship to dirt, interest was drawn to its possible symbolic meaning. During the revisit, ‘dirt’ became the subject of more focused observations (cf. Spradley 1980), also because of the staff’s preoccupation with their newly received uniforms. The field notes included detailed descriptions of the daily interaction between residents and staff members, as well as the material context, such as the design, layout, and furnishing of the group home. In addition, the staff’s own words, descriptions, and understandings of care practices were a particular focus, as this also provides insight into the participants’ social world (Blaikie 2010: 19). The first author’s whereabouts in the material surroundings were also included in the field notes (cf. Emerson, Fretz & Shaw 2011).
At the beginning of the fieldwork, the field notes were a combination of ‘jottings’, events and impressions ‘captured in keywords and phrases’ (Emerson, Fretz & Shaw 2011: 29), and of more complete sentences and descriptions, mostly made alone in the common room. However, after openly going around with the notebook to record the physical surroundings of the group home, taking notes in front of the residents and staff became less uncomfortable. The notebook seemed to have become more familiar, less intimidating, and ‘disarmed’ in a way. The ability to take notes openly increased the number of verbatim records and detailed descriptions. Taking notes in the residents’ apartments, however, never felt right. When returning from the field, usually on the same afternoon or evening, the handwritten notes were typed out, and at the same time elaborated and expanded based on memory. Despite this, and despite striving for detailed descriptions and verbatim records, field notes can never be completely objective or neutral texts, because researchers will always to some degree influence both the observations made and the written text (Emerson, Fretz & Shaw 2011).
The data were analysed by both authors. First, we individually examined the field notes and identified representations of dirt. Then, we compared and discussed our findings. We played with different types and categories of dirt and we investigated and compared the contexts in which dirt was (and was not) represented, searching for patterns of symbolic meaning. It was only then that we brought in the theoretical resources, first Douglas, which was an obvious resource, and eventually others.
The study was reported to, and conducted according to the guidelines and regulations of, the Social Science Data Services in Norway (ref. no. 57993), including informed consent and the use of fictitious names. Due to lacking capacity to consent (assessed by the general manager of the group home), next of kin and legal guardians consented on behalf of the residents. However, ethical considerations were continuously made in cooperation with staff regarding the residents’ wishes and reactions to the researcher’s presence in their apartment. The residents did not seem to react negatively or in any other way object to the researcher being with them, with one possible exception. One day, Peter got quite upset and the first author chose to leave his apartment. He calmed down later in the day, but staff said the agitation could be caused by many things.
Theoretical Resources
The symbolic and ritual significance of dirt and pollution is associated first and foremost with the work of Douglas (1966). Dirt, she argues, is ‘essentially disorder. There is no such thing as absolute dirt: it exists in the eye of the beholder’ (Douglas 1966: 2). From old religious impurity rites to modern hygiene, dirt and pollution are related to practices of ordering. ‘Where there is dirt there is system’, Douglas (1966: 36) contends, and continues, ‘Dirt is the by-product of a systematic ordering and classification of matter, in so far as ordering involves rejecting inappropriate elements’.
Douglas (1966) asks us to escape essentialism to grasp the relational and symbolic meanings contained in ideas and practices of pollution; that is, how ideas about pollution relate to social life. In her view, ‘Some pollutions are used as analogies for expressing a general view of social order’ (Douglas 1966: 3). Social order can thus be analysed in situations where order is threatened or questioned, or through the protection or restoration of a particular order. Our ‘pollution behaviour’, she says, ‘is the reaction which condemns any object and idea likely to confuse or contradict cherished classifications’ (Douglas 1966: 37).
Douglas’s conception of impurity and pollution bear many resemblances to the notion of abjection theorized by Kristeva (1982). Abjection refers to a bodily reaction in the form of nausea or disgust towards certain elements or forms of defilement. However, it is ‘not lack of cleanliness or health that causes abjection, but what disturbs identity, system, order’ (Kristeva 1982: 4). Although Kristeva criticizes Douglas for sticking to too strong a subject, actively searching for meaning and order, and thus underestimating the power that structure holds on the subject, she agrees with the defilement’s symbolic significance: ‘Defilement is what is jettisoned from the “symbolic system”’ (Kristeva 1982: 65).
Hughes (2015: 996) applies Kristeva’s idea of abjection in an analysis of the ‘politics of resentment’ directed towards disabled people in contemporary Britain, a politics which he claims is ‘constructed from “reactionary or conservative revolutionary stances”’. After a period marked by activism and stronger rights for minority groups, economic downturns seem to create ground for populist politics that make disabled people the scapegoat (Hughes 2015; see also Briant, Watson & Philo 2013). This is not only about disabled people being regarded as heavy consumers of public resources but also because austerity policies tend to mobilize conservative sentiments and the desire to re-create traditional order (Hughes 2015).
The need to maintain order may very well be associated with conservative sentiments but it is also somewhat generic. The relapse into more traditional politics and congregated living for people with intellectual disabilities in Norway probably reflects that it is challenging to change established orders exclusively by political means. Change will always involve a period of liminality for those who are set to realize it, which means that they will want to hold on to the old order until a practical alternative is available.
Representations of Dirt and Contagion
Dirt manifests in numerous ways in the group home, such as in its design, materials, rituals, and social regulations as well as in a number of the staff’s verbal statements.
Dirt was one of the first subjects to be confronted with when arriving at the group home. When entering the main entrance, one enters a rectangular room, where the wall to the left is covered with dark grey metal lockers. To the right are two washbasins, placed approximately one metre apart from each other, and on each side hangs dispensers for soap and anti-bacterial gel (this was before the pandemic). On one of the washbasins lies a package of disposable blue gloves. Only by passing this room can one reach the rest of the group home: the residents’ apartments, the staff’s office, and the common room. The entrance room’s placement, the furnishing, and the objects it contains cause it to resemble an airlock designed to separate one environment from another. This somewhat strange entrance and the strong presence of infection control made the feeling and topic of contamination present from the first day of fieldwork. As we shall see, it is not the fear of bringing impurities into a vulnerable environment that justifies the airlock that must be passed but preventing staff from bringing impurities out.
Interiors
Once one has passed the airlock, the impression that one is in an unclean environment is confirmed in a variety of ways. Posters explain the rules and routines for washing, and many arrangements have been made for easy cleaning. The presence of leather sofas and armchairs, and kitchen chairs with either a leather seat or a detachable fabric seat, was especially prominent in both residents’ apartments and the common room. According to staff, this was because leather and detachable chair seats were easily cleaned if the residents spilled food or drinks or perhaps wet themselves.
For this reason, to be safe, staff also had separate chairs in the group home. In each resident’s apartment, one kitchen chair was reserved for staff only. The residents never used these chairs. In addition, whereas Frank rarely used his two leather sofas, leaving them clean and useable to staff, Peter used his sofa often, causing the need for an extra armchair, the ‘staff chair’, as it was called.
When in the common room, the staff sat around the coffee table, in the leather sofas or armchair, while the residents sat by the kitchen table. Due to hygiene reasons, the staff had decided that residents were not allowed to sit in the staff’s seating area, and as with the staff’s chairs in the apartments, the residents never broke this rule. However, certain staff members could occasionally sit on the residents’ kitchen chairs for a short time, such as when tying their shoes. Furthermore, the kitchen table was covered in a clear plastic tablecloth with several rips and coffee stains, whereas the coffee table was clean and decorated with a green potted plant and a tray of clean coffee cups. There is more to this than simply hygiene. According to Pickering and Wiseman (2019: 7), dirt is essentially related to belonging, such as to ‘questions of who is welcome in what spaces’. The residents were not welcome in the staff seating area. They did not belong to those for whom the seating area was designated.
In addition, in the car that the residents shared (including sharing the cost of the vehicle), residents and staff had separate seating arrangements. The residents would sit in the back seat, while the staff sat in the front, even when only one resident was in the car and one staff member was driving (leaving a free front seat). Now and then, for example, when two staff members were going on a drive and invited the researcher to join, one staff member would have to sit in the back. He or she would then sit on a disposable bed pad. They explained that this was because the car was so dirty. One may wonder why one would not instead wash the car, or the kitchen table in the common room for that matter, instead of using the disposable bed pads and tattered and stained plastic tablecloth.
The disposable bed pads also had a wider application, as the following extract from the fieldnotes illustrates:
It is almost midnight. Staff member John and Frank are in the bathroom, and while I wait, I sit down on the kitchen chair in the hallway. John comes out of the bathroom, sees where I am sitting, and says, “Yes, that’s the chair that I use”. I stand up and ask if John wants it now. “No”, he says, “but like I told you, this is the chair I usually put a pad on before using”. I turn and look at the chair’s leather seat and back. There is no visible dirt or spoil on it. “It’s just in case”, John says and fetches a pad to me. I unfold it, place it on the chair and sit down.
Despite arrangements for easy cleaning, and regardless of whether sofas and chairs were visibly dirty or not, staff took measures to avoid contamination from the residents. However, instead of washing the chair, they chose to cover it. They are protecting themselves against the dirtiness of the residents. They are not equally concerned that it should also be clean for the residents.
In addition, for the purpose of easy cleaning, Peter’s living room had wet room flooring. Nevertheless, the floor was quite dirty. Several staff members claimed that the living room floor was ‘impossible to keep clean’, but it seemed to be rarely washed. It seemed as though everything the residents used and touched was dirty by definition; hence, it did not matter how much one washed it.
Cups
Cups were a large part of everyday life in the group home, mostly due to the daily and frequent coffee drinking by both staff and residents in the common room. The staff was very careful not to leave their cups unattended, in case residents would drink from or touch them. Some staff members even placed their cups on top of the fridge, where they were certain the residents could not reach them. When touched by a resident, cups ended up in the kitchen sink or dishwasher:
We are in the common room, and Peter grabs a coffee cup. Jack, the staff member, takes the cup from Peter and places it in the kitchen sink. Jack turns to me and explains that this is the main reason why there are always cups in the sink and that the consumption of cups is huge. “We never know where their hands have been”, Jack says.
If touched by residents, cups were viewed as potentially contaminated by staff and were put away to be washed. However, this was not the case if residents touched each other’s cups. A couple of times, Frank drank from Peter’s cup without the cup being put away. Staff also would not tell Peter or the staff member accompanying Peter that Frank had drunk from Peter’s cup, whereby Peter would continue using the cup as though nothing had happened.
In her ethnographic study from the Dorado Special Education Needs College in Australia, Avery (2020) reports the same behaviour with respect to cutlery. The school had communal dining and cutlery which, Avery (2020: 94) contends, ‘presents an interesting example of contamination’, not just because it demonstrates the staff’s fear of infection from students but also because of ‘their disregard for the possibility of contamination between students’. Avery states that staff had argued for and won the right to separate cutlery several years earlier. To Avery (2020: 95–96), this outcome suggests ‘that the fear and disgust arise not from the ill manners and habits of the diners but from the diners themselves’.
The same is true for the cups at the group home. When placed in the dishwasher, the cups are washed using the intensive dishwasher program intended for pots and especially dirty dishes:
Jack, one of the on-call staff members, is about to start the dishwasher in the common room. It contains so to speak only cups and glasses. He asks Sophie, one of the permanent staff members, which program he should use. Sophie tells him to use the program with the highest temperature, she believes this is 70 degrees. Jack says that this program takes a very long time. Sophie says that’s OK. Jack starts the dishwasher on the intensive dishwasher program.
This would not happen if it were just the staff’s cups. Unlike the cutlery at Dorado, the staff did not have separate cups. They could therefore not distinguish the cups from those the residents had used. Because the cup Frank or Peter had used was no dirtier than the ones used by staff, the actual dirt was not the problem, but rather whose dirt it was.
Clothes
As with cups, clothes were washed often, and some at high temperatures. Peter and Frank showered every morning, and Peter even more so because he also showered every evening before going to bed. Therefore, the residents put on clean clothes every day, and clothes from the day before were washed. The residents never wore the same clothes two days in a row, regardless of whether the clothes were dirty or not. When asked if the clothes were washed even when clean, a staff member answered, ‘But they are usually dirty’. It is possible that because the residents have chairs that the staff consider dirty (and that they do not wash, but cover if they use them), the staff would also perceive the residents’ clothes as dirty, even after minimal use.
The residents’ clothes were washed daily, whereas the staff’s workwear was washed both daily and at high temperatures (90 degrees), according to one staff member. Workwear was a relatively new measurement at the group home, being implemented the year before, and included trousers and t-shirts. Staff appreciated receiving workwear and not having to wear personal clothes due to ‘hygiene’ and ‘risk of contagion’, as they said. This particularly applied to situations of ‘bodywork’, such as assisting residents in the shower or on the toilet. According to Twigg (2000: 391), ‘Bodywork is ambivalent work. At times it verges on areas of taboo in connection with sexuality or human waste’. It seemed that the staff felt the dirt both as indefinable and as ever-present. One staff member said that sometimes it felt as though she had ‘a layer all over the body’. John, another staff member, expressed the same and linked it to the risk of infection:
“When you get home [from work], you feel like you have something on you because you’ve been dealing with it, excrement and such”. John touches different places on his neck, illustrating that something invisible is there. He says that perhaps staff got the workwear to prevent “infection”. I ask him from what. “That is a good question”, he says and laughs. He continues, “Cold, perhaps, or intestinal bacteria. I honestly do not know”.
The similarities both in practice and in accounts show that the fear of contagion and the pollution behaviour reflect institutional beliefs and practices rather than purely personal sentiments. Furthermore, despite the apparent fear of some type of contagion, very few staff members actually wore workwear in full. Some wore only trousers, others only the T-shirt, whereas some used neither. Some staff members found the trousers to be uncomfortable. Others simply preferred to use their personal clothes. Several pointed out that the workwear was too thick and warm to be worn when assisting the residents in the shower. More importantly, there were no consequences for staff who did not wear the workwear. Management did not react, nor did other staff members. The same was true for staff members occasionally using the kitchen chairs (e.g. while tying their shoes). None of these staff members was viewed or treated as dirty or potentially contagious, and they still sat in the sofas and chairs reserved for staff.
We see that the staff’s ‘pollution behaviour’ (Douglas 1966: 36) is not very consistent. It may express some of the ambivalence that according to Twigg (2000), characterizes bodywork. Twigg (2000) reports from elderly care and finds that the body element is often downplayed by care workers. Instead, ‘They emphasise the emotional and interpersonal aspects, and the skills required to negotiate and maintain these’ (Twigg 2000: 400). Some even ‘internalised the situation and managed their feelings by thinking themselves into the position of a recipient of care’ (Twigg 2000: 401). This is not the case in the group home reported from here. It may be easier to identify with the vulnerability of an older person, a position one must expect to find oneself in at some point, than with people with intellectual disability. According to Hughes (2019: 89) the ‘meaning of impairment is often Janus-faced’. It represents both vulnerability and abnormality, pity and disgust, or ‘both good to be good to and good to mistreat’ (Hughes 2019: 91).
It is this ambivalence, we believe, that characterizes the staff’s work in the group home under study. There is a clear will to create well-being and good times, both for the individual resident and for the residents as a whole, for example, the joint meals on Saturdays that everyone looks forward to while maintaining the regime of different seating. There are also examples of caring physical contact, such as stroking of the residents’ hair or arms, as well as walking arm-in-arm. This happens without the staff washing themselves or taking measures to prevent infection. Nevertheless, the collective perception of the residents as unclean and potentially contagious is maintained, both ritually and verbally, which is what creates its ambiguous character of both caring and rejecting.
This may also shed light on the strange and unfounded fear of contagion. Pickering and Wiseman (2019) discuss the relation between dirt and contagion, with reference to Kristeva’s work on the abject. For Kristeva (1982: 9), they say, ‘“Abjection is above all ambiguity” but it is ambiguity of a particular sort – where boundary between self and other or self and the world is unclear’ (Pickering & Wiseman 2019: 18). It is for this reason that ‘attention to abjection necessarily brings contagion back in to the study of dirt’ (Pickering & Wiseman 2019: 18). Dirt resides in the blurry and ambiguous space between self and other, and it is this ambiguity that causes the fear that dirt can spread to others. By ‘self’ we understand here something institutional rather than something individual or personal – the staff’s notion of “us” in contrast to “them”. The fear of contagion is not linked to the dirt as such, but to ‘them’, that is, the alleged carriers of the dirt.
James says: “The workwear was due to contagion, to not be infected and to not infect those at home”. He then talks about the importance of washing one’s hands, and that staff does not have a suitable place for changing into workwear. He also says that staff is not allowed to take workwear home with them, because then the whole point would be gone, as those at home could be infected. I ask what it is that is contagious, and if there has been some kind of infection among the residents and staff at the group home. James shakes his head and says, “No”. I ask if it could be a kind of cold, and James answers that it could be that, perhaps. He also mentions E. coli, but they have never had this in the group home.
Even if staff were contaminated by the same source, they did not fear contagion from each other. They want a place where the staff can change and store their clothes together. It is not difficult to see that this has symbolic meaning and that staff and residents are equivalent to self and other. Equally obvious is the symbolic nature of the fear of contagion. No stories speak of anyone actually being infected by the residents, nor can the staff say what kind of infection they fear. In addition, as indicated in connection with the airlock, the only realistic possibility of being infected in the group home is if staff brings infection in from the outside first. However, there was no example of the staff washing themselves before entering the group home.
The inconsistency in the staff’s behaviour, which we have seen in relation to lack of cleaning, the use of workwear, cups, and chairs, and also the caring physical contact shows the symbolic nature of their ‘pollution behaviour’. This can be understood in relation to the ambiguity and disturbing of identity, system, and order that were discussed by Kristeva (1982: 4). Regarding identity, the examples show that ambivalence relates to the boundary between self and other. It is not about the residents’ inability to keep themselves clean but about the inherent impurity of the residents themselves. In addition, residents are threatening not only to the individual staff members but also to the system. Maintaining clear boundaries between them and us requires coordination and routines. However, it is not just about boundaries; it is also about establishing and maintaining the cherished social order on which identity and systems can rest. The establishment and maintenance of this order is something constantly and institutionally accomplished. We observe that the staff have a common understanding of the pollution and risk of contagion, even if individual behaviour does not always align with it. The institutional order is maintained through a set of social rituals, such as using separate chairs, disposable bed pads, and (symbolic) workwear, along with washing clothes and cups. As Douglas (1966: 63) claims, ‘Social rituals create a reality which would be nothing without them’.
Concluding Discussion
One cannot fail to see that there is something irrational about the staff’s perception of dirt in this group home. James’s explanation about the risk of contagion and the reasons not to bring workwear home due to fear of infecting one’s family is an excellent example. However, one gets the feeling that the staff know that this is irrational. They are not able to provide a sensible example of the kind of contagion it could be. Furthermore, the risk of infection is much greater from the outside in than from the inside out. If they were ever to catch a communicable disease, it would hardly be from the residents. Nevertheless, they stick with this pretence. Interestingly, Douglas (1966: 70) claims that our justification of our own pollution avoidance is often ‘pure fantasy’. Hence, the staff’s pollution behaviour does not reflect a realistic mode. It reflects a symbolic mode, which is nevertheless real in its consequences.
We believe that the staff’s pollution behaviour has relevance for understanding the course of the reform described earlier in this article. We have referred to Douglas’s (1966: 37) claim that pollution behaviour is a reaction ‘which condemns any object or idea likely to confuse or contradict cherished classifications’. What is the object or idea being condemned in the group home being studied? We believe it is the normalization of living conditions for people with intellectual disabilities and the normative claim that they should be perceived as people who are not very different from ourselves. This idea formed the basis of the deinstitutionalization reform in Norway and thus the ideals for the post-institutional care service. The problem is probably not the staff’s objection to the idea, but rather the vagueness of the idea and the fact that it is at odds with the group home’s institutional design (Sandvin et al. 1998). Although the physical frames have changed, the boundaries that were meant to be crossed were maintained in the new institutional structure. Consequently, the idea only exists as an ideology and is not followed by a practical implementation strategy. The problem is how to deal with the institutional boundaries that actually exist; merely blurring them only contributes to subtle ways of preserving them.
Sundet (1997) identified that institutional boundaries were being preserved while the reform was being carried out in the 1990s. She tells the story of a man named Arne who moves to a house in a community nearby where he already had a network when the institution that he lived in closed. He even got a job at a local store. It all looks like a success story, but when talking to those who Arne regarded as friends, they stated that they found Arne’s presence troublesome, particularly in informal social gatherings. They could not speak as casually as they used to and did not like drinking alcohol with Arne present. Arne was seen as a ‘party killer’, and they began to avoid telling him where they were going to meet. He had simply become too close. When he was living at the institution, it was clear that he was different, and others were free to think that he wasn’t that different. A person could even ‘hang out’ with him without risking something. However, what had made the relationship risk-free (the classification) had become blurrier, creating bodily discomfort (abject). The removal of the physical space between self and other meant that the existential space between them was sharpened.
Pickering and Wiseman (2019) argue that belonging is central to the analyses of dirt. They claim, ‘Those classified as dirty, historically and contemporary, are those who don’t belong’ (Pickering & Wiseman 2019: 18). Arne was not welcomed as an ‘ordinary’ member of social life in the community. He blurred the space between self and other and was thus a threat to identity and social order.
The same can be said of Peter and Frank, although they cannot be excluded as easily, especially not in a physical sense. Frank and Peter were not able to live on their own without assistance and moved into a small group home, where they have their own fully-fledged apartment. The staff was there to assist them in their own home, as far as possible on their own terms. It was no longer an institution where residents were looked after by staff in congregated settings. The new ideology emphasised a new set of human values, where people with intellectual disability were first and foremost people like you and me, but who, due to their cognitive challenges, needed assistance in their daily life. Unfortunately, little was done to develop professional and practical knowledge on how this ideology could be realised (Sandvin 1996). Instead, staff had to balance between the vague ideals of normalisation and the residents’ extensive needs for care and intimate ‘bodywork’ (Sandvin et al. 1998).
Like Arne, Peter and Frank occupied a space where they were not welcome. In both cases, it was more about existential space than physical space, where traditional boundaries are politically downplayed. Frank and Peter did not claim this room themselves; it was ideologically produced, but the expected proximity had the same effect and blurred the space between self and other; between those who provide and those who receive care. These are both institutionalised identities that cannot be easily dissolved without creating disorder.
It is in this ambiguity, where identities and boundaries become blurred, that the dirt resides. Frank and Peter did not belong in an environment that threatened the cherished classifications and the staff’s institutional identity. They were matter out of place, and thus dirty. Abjection becomes a way for the staff to cope with the lack of order.
Does this mean that the ambition to change the relationship between us and them cannot be realised? Is it impossible to create a new order of things? It is probably more challenging than the reformers envisaged. Transcending the boundaries between us and them will probably require that one challenge not only the notions of ‘them’ but also of ‘us’. Hughes (2007: 680) argues that ‘The real problem in this existential mire is not disability but non-disability’. He claims that the self-perception of being non-disabled is ‘a myth that is used to constitute the flawed other and provide a place of emotional safety from the fear felt by those “clean and proper bodies”… that have deluded themselves into thinking that existence is secure, stable and autonomous’ (Hughes 2007: 680).
The reform that was carried out nearly 30 years ago only dealt with the physical institutions, not the social ones or the institutional identities and orders that they were initially based on. The state considered the reform to be completed when the institutions were gone and the municipalities had assumed responsibility. A temporary law passed for five years, regulated the institutional closure and the development of housing and services in the municipalities. Little or nothing was done after these five years to monitor whether the reform’s ideal goals were met, in order to possibly make the necessary corrections (Sandvin 1996).
On the contrary, the municipalities were left to themselves and had to integrate the new tasks into the existing care system. Furthermore, most of the staff from the institutions that were closed down moved into municipal care, with no additional professional training other than some vague ideological principles.
It is no wonder, then, that working within material and normative structures that reflected a new and progressive form of care created problems and led to a need for strategies that protect identity and maintain established classifications. Moreover, it is not surprising that the municipalities perceive the new material structures as inappropriate and difficult to integrate into the rest of the municipal welfare system. Building larger care homes where more and different groups of people in need of help can be served is regarded as more appropriate. It is expected to be not only more cost-effective but also more capable of restoring a social order that reduces ambiguity and makes care work existentially easier. Perhaps the new and larger care facilities will also be less ‘dirty’.
Competing Interests
The authors have no competing interests to declare.
Author Contributions
The data was generated by the first author. The contributions to the analysis and writing of this article were equal.