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Where do you live? - Housing and long-term care
Kje živiš? - Nastanitev in dolgotrajna oskrbaVito Flaker, Vera Grebenc, Tadeja Kodele, Jana Mali & Mojca Urek 1
Having a home is a necessity and a formal right in our civilisation. On the other hand it is treated as a luxury. The accounts of housing problems such as losing a house due to hospitalisation, being a neighbourhood scapegoat, having nowhere to return, being compelled to live with the perpetrators of abuse, having nowhere to put one’s belonging, being expropriated of the accommodation on the account of being in an institution or being sent to an institution because of having been expropriated of a housing property, show that it is easy to lose a home when someone is vulnerable and that not having a home makes a person more vulnerable. A dwelling is the base of the identity. Therefore it should be granted, especially to those who may suffer major blows to their social identities. Providing housing to the vulnerable groups can be done with: anti-discriminatory measures, social assistance and support, and better housing provision. Institutions should not be an answer to housing distress and should be replaced by short term accommodation to overcome critical episodes and to give people in distress an opportunity for independent living. Having a right to an abode should, however, not be solely individual but also a means of creating spaces where people live together.
Keywords: Deinstitutionalisation; Homelessness; Housing; Nomads; Long-term Care; Identity.
Housing and distress
To have a dwelling, a place to live in, is a basic need in a sedentary civilisation. It protects us from adverse weather conditions – heat or cold; but it also provides many social functions: it is a place of social life, where we create family, store our property, a space of security and intimacy. It is a place where we feel ‘at home’. It also provides the bureaucratic basis for our identity – the permanent address.
The right for housing is declared as a basic human right guaranteed by the constitution and international conventions.1 On the other hand personal experience tells us that having a place to live is a luxury – high prices of property, expensive loans, lack of social and non-profit housing, long waiting lists, disproportionate availability and demand, make access to housing difficult. For somebody with a label, a difficulty or a distress, trying to find a place to live on their own is, a practically unreachable goal. In the last few decades, housing provision has been in decline, while the risk of unemployment has increased (Mandič, 1999, p. 17). Precarious dwelling parallels precarious employment. What people of all sorts of long-term distress have in common is that the housing distress makes the personal distress of any kind greater.
The basic framework of the article is about deinstitutionalisation and long-term care. Both pose the question of where people stay. When discussing the resettlement of inmates of long-stay institutions the question ‘Where will you live?” automatically gets uttered. Less obvious is the question related to long-term care of the people presently not living in institutions. It is not only an issue of where the care is to be provided with all the intricacies of entering private spaces (home help, outreach services), but also recognising the impact of housing distress on long-term difficulties and disabilities.
This article lacks the ambition to address housing as a public or social policy on its own level. It applies qualitative methodology in order to bring out the accounts of housing problems, distress and solutions on the level of personal and private experiences of the people who need long-term care, live in the institutions and suffer because of the lack of appropriate housing. It addresses the interface of public policy and personal experience. The rationale for such a method is in trying to understand how things are on the ground and provide the ground for social work action (rather than social policy).
The method thus employed provides us with a series of vignettes, which bring to light the often neglected experience and provide the fodder to the ground-level small theories which are woven into a text, sometimes unhinged. What we learn about people’s experience should make us think and deliberate about what to do. Hence, the article lacks the standard structure of review of the literature, methods, results and proposals. It is a review of what people have said; it uses the indexical value of their statements to develop the discussion and to inform possible action in construction of the response to housing distress. It does not impose hypotheses on the matter but creates a map of the issues one may encounter and connects them with the little more abstract issues of human existence. Of course, on one hand it is a plight for deinstitutionalisation, but also a set of pointers that can be useful in organising both social support as well as housing services for people who need long-term care.
The article is based on the analysis of interviews and personal care plans of people with long-term mental health distress, dementia, and people with learning and physical disabilities, and women who have experienced violence. The analysis of various research material (Flaker et al., 1995; 1999; 2000; 2004; Mali, 2007; Mali & Milošević, 2007; Bah et al., 2008; Čačinovič Vogrinčič et al., 2008) resulted in an index of needs, consisting of eight categories; besides housing these were life events (that lead to institutionalisation), work and money, everyday life, contacts, discontent in interaction, institutional career, disembededness and affiliation. The index was published as a monograph The Long-term Care (Flaker et al., 2008) in Slovene. The present article is a reworked chapter of the book dealing with the issue of dwelling and housing. It was presented in the Social Work and Deinstitutionalisation course in Dubrovnik, in June 2012
Nomads of the institutional order
Housing distress can be anything from plain homelessness, sleeping rough, under bridges and in cellars; it can be living with friends and acquaintances, living in inappropriate conditions, many people in a cramped space, few households in one flat etc. (Brandon, 1974; Dekleva & Razpotnik, 2007).
People with long term care needs experience all of these. It can be a cause or a consequence of their long-term distress. They are more vulnerable, have more housing problems and this can have, in conjunction with other distresses, more adverse effects to their well-being: ‘He lived in a psychiatric hospital for ten years, primarily because he did not have a place to go. He was divorced, and his family did not want to have contact with him.
Service users are in many ways the last nomads of our civilisation, they keep moving. A person with an experience of mental distress has described his ‘nomadic’ experience: ‘With no home to go to, I had been moving from friend to friend, sleeping on stations, benches, got on the night train to Zagreb and returned back in the morning to go to work. At work I applied for accommodation and I got it for two weeks. Then out again. Then three weeks in a cabin by the railway. Then I was thrown out. Back to the hostels and friends. There was little money, and I used it for drink, there was nothing left to eat.’ They are nomads because they move and they do not belong to a specific territory. But the nomads of long(term) distress can be moved on behalf of others. With this moving, on a symbolic, but sometimes also on a material level, they tear down the normative divides of space, penetrate the limits, borders (of normality, intimacy, sovereignty), challenge the power over the territories and the power radiating from the centre (Deleuze, Guattari, 1980).
Mostly they do not live on their own ground and in their own flats, but in various residential homes that were invented only for them (e.g. group homes, old age homes, social care homes, shelters). Many live with relatives, which in many (Southern) countries is still the ‘normal’ solution for the housing problem: ‘I do not have a housing issue. I live with my mum.’ Especially younger people with an experience of disability stay with their parents, even if they would want to move on and live independently. Living with parents or relatives can, on one hand, be a consequence of material distress, but on the other hand also result in the paternalistic, protective attitude of parents, causing dependent relationships and precluding the emancipation from the carers. Conversely, people with dementia experience transition from independent to dependent life, moving from their own homes to live with relatives or institutions (Mali & Milošević, 2007; Mali, Mešl & Rihter, 2011; Mali, 2010, 2012).
Cause or consequence?
Lack of housing can be the consequence of another social distress (poverty, discrimination and stigmatisation). Often housing conditions of long term care users are unbearable. It is quite likely that they could be in a state of perpetual conflict with their environment; they can become scapegoats for the neighbourhood and its folk devils. They could still be living with their parents, depending on them, being on bad terms with them, in a state of permanent tension. In most cases moving to one’s own flat would resolve the situation, contribute to appeasement and be a step towards emancipation and dissolution of the dependent attachment that could have dragged on for years.
So, being short of a house can be a consequence of mental distress and related difficulties. Shulamit Ramon (1996) reports Scott’s findings from 1993 that thirty to fifty per cent of the homeless have also mental distress. Scott describes three groups of people with mental distress that are simultaneously homeless: 1) those who have become homeless after release from hospital,2) younger people, who have escaped psychiatric intervention, their distress however, added to their untenable position in the society, 3) those, who started to experience mental distress during their homelessness or during other adverse personal or social difficulties that lead to homelessness. It is difficult to define the causal relationship. Is the mental distress a consequence of homelessness or homelessness a consequence of mental distress? However, the fact is that deinstitutionalisation does not produce homelessness – the data shows that most of the long term institutionalised inmates did not remain without a home of their own after the hospital closure.
Housing problems can arise from living in an institution. People with learning difficulties can be disinherited because the system of paying for the institutional care will take away the real estate to be inherited. Because of the disability (dementia, learning difficulties, mental distress) and diminished contractual power, people can remain with no flat after the court litigations, they can be taken advantage of by relatives or strangers (Lamovec, 1998).
The life of a psychiatric service user is often intertwined with housing problems. Even if there were no such problems at the onset of hospitalisation, it is very likely that he or she will encounter such problems after release or while in hospital. One of the people we talked to has, for instance, discovered upon his release from the hospital that his flat is now occupied by some other tenants. He returned to hospital. Another still related that during a prolonged stay in an institution his flat was squatted. Very often a housing problem will be the main contingency for a person with a psychiatric diagnosis to be referred to hospital or social care home.
Family violence and abuse cause a housing and a mental distress simultaneously – there is no space to retreat to or the chance to have a room of one’s own (Urek, 2005). Similarly, if one wanted to run away from a mental hospital, there is no space where a person can enact their dissent against hospitalisation – if one was committed by their near ones, there is a great chance that they will strive to annihilate such, unwarranted, self-release. In such cases we can talk about the lack of accommodation as a consequence of distress with living with others. Someone has a place of their own, but is compelled for different reasons (family violence, condemning the running away by the relatives) not to use it.
A distress (a social, mental, distress of living with others) can on the other hand arise from, or become more distressful, due to lack of accommodation. In dementia, moving home deepens the feeling of disorientation. Women who experience violence remain in the violent environment also because they do not have anywhere to go to. Using drugs is more dangerous if one does not have a safe place to use them (Kvaternik & Grebenc, 2009). Mental distress grows because people do not have a place to be. Lack of sleep, insecurity and precariousness of one’s life (where to sleep, where to store one’s property, does one behave according to the hosts expectations?) can trigger or deepen the distress.
Even if someone has a flat – is an owner or has a solid tenure – this does not guarantee that there will not be problems. People in their environment could decide that they do not use it in an appropriate fashion. One can be accused that he or she neglects the property, has too many visitors, that the flat is full of stench, that he is not paying the bills, etc. Unpaid electricity can be an immediate reason for being sent to an old age home. Not only poverty, but also negligence, forgetfulness, eccentric life style, powerlessness – in short: a residual deviance or interaction offences (Goffman, 1963; Scheff, 1966, Flaker et al., 2008, pp. 231–257) can very swiftly, especially if connected to the label of a mental patient, transform a tenant or a property owner into a homeless person.
People with long term distress may encounter various situations related to housing distress. Admission to a hospital or social care home when facing a housing problem or a lack of accommodation is common. After a release from an institution there is no place to go (it was rented out, sold by relatives, leased by the landlord). Users of psychiatric institutions, who experience violence at home, often do not have anywhere to go to. The environment does not accept a user (he may be a scapegoat for everything that goes wrong in the neighbourhood, a folk devil, on bad terms with neighbours). They live with parents in a dependent relationship, which is hard to get out of. They may be living in neglected, disordered conditions. When they go to a hospital or an institution they do not have a place to store their belongings, furniture or personal things.
Housing concerns for people with long term distress is often linked to institutional life. Going to an institution can be a solution to a housing problem, but also its cause. On the other hand, housing problems (disarranged conditions of neglect, dependency and conflict, repulsion by the environment) causes (additional) distress, including the fact of not having shelter.
A place to be
Living space, a home or a flat, as we say in industrial society, in our civilisation (and partially also in our climate) is a basic necessity of existence and identity. Not surprisingly it is among the elementary desires of people coming out of institutions after a long time to have a flat, a place to be. Anticipated satisfaction and fervour attest that a flat is a guarantee of existence in general – that a human being has somewhere to be.
A few years ago a woman in her thirties called on an advocacy group, she ran away from a mental hospital and she was to be sent to a long stay institution (the last stop). A big part of the problem was that she was living with her father in a dependent attachment. This gave rise to all kinds of interactional offences – the father not being satisfied with her performance in life, criticising her divorce, not tolerating visitors etc. and was an interactional offence in itself – ‘What is a grown up woman doing living with her father (some professionals assumed that there was an issue of sexual abuse)?’ With the assistance of social services and advocates she found a bed sit where she still lives independently and without troubles.
In this case, the flat itself was ‘a cure’ for a ‘mental distress’, something that was not achieved by many years of psychotherapy, medical treatment and would not be achieved by living in an institution at all.
What a person, who was in a hospital for a while, misses, is a place that gives a sense of security, warmth, intimacy. A person must be somewhere, even if that means he has to be in a hospital. However, the experience of living in an asylum is an experience of being nowhere really (Estroff, 1981; Lamovec, 1998). It is a ‘provisional existence’. The social function of an institution is one of a warehouse for worthless people and inner arrangements of the asylum perpetually undermine the feeling of really being somewhere. It does not only undermine the sense of belonging, security, potential spatial self-determination or intimacy, but it also gives the feeling of an imaginary space, a space that is obviously devoid of everyday human reality (Flaker, 1998a).
An abode is an obvious part of everyday life, however, a dear and expensive one. The significance of this investment becomes clear – partially because of high market prices and the housing shortage and partially because of the value that we ascribe to intimacy and self-determination. The significance of a house as personal capital that conserves the value becomes even clearer when we inhabit the role of a mental patient or similar one. Even if we reside in an institution, a house or a flat on the outside enables us to live a more decent life. Firstly, we know we have a place to go to; secondly, our formal status is a better one. Simultaneously, the real estate property is a guarantee of another kind.
A flat or house enables a general organisation of living and is at the same time the space of important life events. With a private house or a flat a person is delineated from other spaces and using this she or he creates their own private (or household) space that is an antithesis to the public or institutional spaces. ‘I am disturbed by the curtains, but we have to have them because we do not want neighbours to peek. But then we have to have lights on.’ – space division and staging of privacy are important. In this case this is a hydraulic relationship – more privacy is less light and vice versa. For the organisation of living it is not enough to have a flat that enables privacy, the living conditions are important too (light, warmth, special needs amendments).
A house or a flat establishes the sovereignty of an individual, a family or a household over a space. In a shelter, a group home, an old age home or a common abode, establishing sovereignty over a space is a strenuous thing to do. There the sovereignty is limited; firstly, because the authority of the organisation in charge of the facility and secondly, because the space is shared with other residents (Flaker, 1993, 1998b).
A flat or a house enables the process of personal reproduction (sleeping, food, washing, etc.). Some homeless people or visitors of drop-ins for drug users, use their few hours stay to cook, sleep, wash clothes or take a shower, etc. (Kvaternik & Grebenc, 2009a). In addition, a dwelling enables learning, studying, getting information (TV, phone, internet) and enjoying hobbies etc. In one’s own flat a person can satisfy his or her needs and realise his desires in his or her own way and at their own pace. And these can be radically altered by a stay in an institution. A person with dementia, for example, can, when moved to an establishment, be prevented from performing their everyday rituals (in the morning they might want to have a walk but there is no escort available).
A permanent address is an important function needed in a bureaucratical society. Without a permanent address a person virtually does not exist. A permanent address is a condition for the virtual identity of a bureaucratic register. If a person does not hold one, this can lead to all sorts of troubles (difficulties with employment, with police). Long term mental health service users often have problems with the address because they remain without a home due to sale, not paying bills or rent and so on. Due to not having an address, people have been deprived of privatisation certificates, an employment visa, even citizenship. Problems with a permanent address can contribute to the need for institutional placement.
Eviction or cessation of tenure because of hospitalisation can trigger the sale of a property created only by lifelong effort, placement in a long stay institution, loss of memorabilia. It often happens that a user can lose all his property that he or she had before hospitalisation. It can be about the work of life.
A young woman has for years been creating a ‘time machine’ project that consisted of numerous sketches of dresses from different historical periods. It was meant to function as a thematic park. During her hospitalisation her relatives have thrown away her stuff – for her own good since they connected her ‘illness’ to her work (A time machine!!).
The ditched things can be only minor souvenirs of the people and places from the past:
A middle aged man was hospitalised and then sent to a long stay institution. Meanwhile someone moved into his council bedsit. His belongings, including all the letters, photos from his childhood and documents were stored in the cellar. After a few years mould developed and the stench forced the tenants of the block to empty the cellar and ditch everything in a dump. When he returned from the institution with the help of an advocate, after a long trial he regained a substitute flat but the artefacts of his life could not be restored.
Hospitalisation can make people give up a flat, and as a consequence also give up all their property. A mental health user, for example, because he was hospitalised, had to give up his flat and empty it. Consequently, he had to sell all of his belongings very quickly (settee, television, stove etc.) at a low price and some he just gave away.
Letting the flat go in conjunction with hospitalisation can cause impoverishment of a radical kind.
She went to live in an old age home upon the advice of her late husband’s daughter that worked there. She returned home because she was afraid that her relatives would throw away everything and burn it. But she had to go back to the institution. ‘I have a room in my house till I die’ she says, searching to show the contract, which shows the reality of her claim.
Such stories are not uncommon among people in institutions. They lose their personal belongings, which in our civilisation is an important asset in building one’s identity. A space to store personal belongings and quantity of personal items for inmates of institutions or group homes, is a measure of normalisation and confirmation of personal sovereignty for a resident. On the streets and also in institutions ‘plastic bag people’ are common sights – people carrying in plastic bags all their property – Omnia mea mecum porto – a portable identity bag.
A place to organise identity
A flat or a house is an important space of personal sociability, an opportunity to socialise, a place to create a family, a space where you can invite people: ‘Toni is living in a small (10 square meters) room from his childhood. He wants a living space that he would be proud of, where he would feel fine, where he can take his friends to and where he can relax when he is tense.’ Distress connected to lack of a space where one can organise his identity is very well known to people living in the institutions, where they cannot invite visitors, nor can they cook for themselves or for others, have a family or at least a partner that can stay overnight.
Not only a space for socialising and family life, for identity, the location where one lives is important. Choice of environment reflects the desires and a special identity: ‘A year before the accident I had already considered moving to the coast. When I was young I was an active sportsman. When I was fifteen I started rowing, water was always my friend. Later I competed in the jet ski national championship, in the last five years I was also a water skier. That is my favourite sport. This is why I choose to live in a group home on the coast.’ This example points to the fact that a personal crisis or a life shift, in this case becoming blind, is an important moment in changing the place of residence. ‘Where are you from?’ is an important determinant in creating an impression about a person.
As we have already pointed out, a place to stay is important when creating a family. A family is usually represented as a group that lives together and the house or flat often constitutes the family. However, there are many families that do not live together, that are displaced. They have fallen apart also for the reasons of long-term care (too much pressure due to the care for a relative with dementia, hospitalisation of a kinsman, serious accident, etc.). On the other hand there are dwellings that contain more than one household, e.g. when a woman experiencing violence moves back to her parents or her children.
Although the flat was hers she left. She found a sub-tenant room in a nearby village. There she lived till last winter when she had to leave that place too. Sorting out the property matters took a very long time after the divorce. She had a solicitor that only took money and did nothing. She could not return to her flat, so she went to stay with her son who is living with his wife and two children in a two bedroom flat.
A flat or a house is also an important tool of self-presentation. For example furniture, ornaments and prestigious objects and their arrangement tell an important story about lifestyle, values, etc.: ‘Ana has almost furnished the flat already. Only the window curtains are missing.’ A house enables us to give the space a personal mark – an older man makes it a priority to put an old chair from a scrapyard into his furnished room of a group home. Personal marking of the space becomes precarious in an institution; our hold on the space is minimal if any. Without this function our personal value diminishes and indirectly makes many everyday practices hard to perform (visits, coffee with neighbours, embarrassment with accidental visitors, e.g. meter readers; inclusion in networks where interior design is an important topic – e.g. flowers, do it yourself).
Space for intimacy
An abode, or just a room within a flat, enables privacy. In fact the socio-spatial organisation of the flat is one of the gradations of the intimacy. While we meet postmen, rent collectors in the doorway or invite them to the hall (antechamber), more familiar guests we invite to the sitting room, dining room, when having more fun even to the kitchen. Only very private guests are invited to the bedrooms. The bathroom, in some ways the most private part of the apartment, is, however, opened to anybody in need – but note, it is the only room with an inside lock!
In the institution the private space gains value. Their own room is a retreat and treat for the inmates, a space, where they can be alone. Group homes have more privacy, but still not enough (Flaker, 1998b). A blind man living in such a home said about his privacy: ‘If you want to function like a grown up, mature person, you need intimacy, you need your peace, which here is almost impossible to have. People are like this, they want to know everything. As I had an experience of independent and also family life, I miss my privacy and peace.’ Intimacy is increasingly an important value of everyday life.
One of the essential components of sovereignty over a space is to have peace and quiet when we want it and not to be disturbed by the others. In the institution this is a rare privilege. ‘A younger woman with physical disability lives with three old women in a room in an old age home. One of them is calling her every night. This makes her very nervous, because she cannot get enough of sleep. People living in a group home also wish to have their peace and quiet, which is hard to obtain in a shared room: ‘my goal is to find a place of my own. Maybe this will be possible through a housing association. Because of my handicap I am depending on the help of the others, but this makes the desire to be left alone, have my quiet moments even stronger. If I want to have company I can always call friends to come around.’ To have one’s peace and quiet is even more important when we live in a tense or even violent environment. A small apartment means more exposure to violence: ‘My husband is often violent, living in a one bedroom flat, makes the child witness the violence very often.’
Privacy of the dwelling is a condition for fulfilling private intimate desires. Lack of privacy or its deprivation may however have an impact on those who in such condition perform otherwise private or intimate deeds and it may have an impact on the quality of the activity that is otherwise defined private. One possible outcome is either a person relinquishes the activity or performs it rarely (because they observe the norms of the privacy), or they preform it with less delight because they are being disturbed, or they transform it from an intimate into a collective activity (e.g. TV – I cannot watch the programme of my choice but I can discuss the program with others watching). Beyond the private there may be hidden desires, the performing of activities that we would be ashamed of, or the ones that we need for discretion or loneliness.
Privacy is paradoxically a condition for social contacts with others. We need privacy to use the phone, computer and internet. Users living in group homes are aware of this deficit. Not having one’s own personal computer is a sign of lack of intimacy. While the use of mobile phones diminishes the importance of residence as a place where a person can be reached by phone, the internet and computer have strengthened significance of habitation for personal and private communication with others. Although the internet can be accessed anywhere, it imposes the need for a private space.
The landline phone made very personal conversations possible, but these were in the conditions of a household, where phones were usually placed in a common space (hall, sitting room), often exposed to the unintentional ‘eavesdropping’ of others. Similarly this was the case in institutions, where phones were initially placed in offices or common rooms. The privacy of conversations improved with installing phones in rooms of the members of the households and with cordless appliances, in the institutions by the installation of public phones (private spaces in the public space). The mobile phone has completely personalised the telephony (and created confusion between the public and private), at the same time it has separated the accessibility from a particular place (home, work) where someone was accessible to everybody (now people do not drop by just to see if you are in).
Collective residence does produce problems of intimacy and the need to agree on, for example, the programme to be watched. Discordances are settled by residents, sometimes with the assistance of the staff. As conflicts are generated by living together, we can say that a lack of housing generates the necessity for (professional) intervention. Often these interventions are needless since the problem is spatial and can be resolved spatially.
Living with others
Regardless of the norm of privacy of the dwelling, there are a number of users that because of loneliness or because they are used to or because this could be a source of solidarity and help, who wish to live with other people. Forms of living with others are various. Basic forms are collective living in a housing community (Wohngemeinschaft), as they were invented in the 60s, are mostly practiced by students to save money for rent, or sharing houses with ‘room mates’, also popular with students but not unknown to happen with the elderly too.
Collective living is a wish of younger people (e.g. physically disabled): ‘I would choose a community of young handicapped people. This would be a house with not more than ten residents, common space, but everyone would have their own room with its own toilet. The house would be adapted for the handicaps and there would be only volunteers working. I would need health care too.’ Young people like collective arrangements, partially because of financial implications, partially because of possibilities to socialise, getting to know new people and the possibility to be independent from parents: ‘I would like to live in a group home, so I could have friends. There would be five or six people. But I would like a room of my own.’ Even when the wish is to live collectively, there is a need of private space. There is a dialectic of desire to be with people and have privacy.
Collective living is a desire of the people who are used to collective living in institutions. They assume that collective living will provide the services they need and that these services would be more readily available if there are more people needing them.
On the other hand living with others means dealing with problems that living together brings about:
Mark is living with four other residents (two of them quite old). He would like to contribute to housework, e.g. clean the toilet, sweep the kitchen, tidy rooms, help with the washing. But first he has to learn how to get on with other residents. He did not trust his new flat mates, got upset, started to yell and accuse them of things. He needed security; there were traces of long institutionalisation. He was afraid and did not trust his mates and was, for example, hiding food in his room. Later the fear subsided. But still he took the food to his room, now not out fear that it would be eaten, but not to forget to eat it.
Living with others and adapting to it can have good side effects – people learn to make agreements, cooperate, to be independent and autonomous.
Living together with other people can be, for those who live in larger flats and get a tenant, also a source of income and some service. Older people or disabled people advertise lodging in return for support in everyday life (e.g. care, companionship, escort etc.). In some countries authorities sponsor this kind of combination by giving a person in need of support a bigger house or a flat so they can get a flat mate, a volunteer who is with the support of social services, available to help his or her ‘landlord’.
The legal relationship to a property (ownership or tenure) is one of the basic needs of people who need continuous care, since it bears on their mental health and social well-being, but is also a contractual power of a person.
Because people with special needs are often stigmatised and deprived they need anti-discriminatory measures (e.g. advantage on waiting lists, special apartments for people with special needs, special housing associations and cooperatives). In public tenders for non-profit housing, people with disabilities have, in principle, the advantage.
The existing anti-discriminative measures are mostly not well known by the users. Many times they are too formal or impossible to implement. Often the inmates of long stay institutions, for example, in spite of the fact that they do not have an income and are poor, do not reach the number of ‘points’ required for social housing – they do not have a family.
Long term care users, especially the people with mental distress, need a secure arrangement since it is often the case that they lose their flat because of hospitalisation, institutionalisation or because the distress itself of the stigma acquired. It is therefore vital to have a stable basis and firm rights for housing. In their contracts there should be safeguards against eviction, there should be statutory guarantees issued and actual warranties ready.
Some have their own property. This needs to be secured too. The present system of care ‘makes the property vanish’, since it is used to pay for the care in the institution. With alternative arrangements this could be prevented and users could use the property to increase their contractual power (e.g. by being a member of a housing cooperative they could invest their property in their own social security).
Maintaining the status?
Many long-term care users have difficulties in maintaining the formal relationship to the property (ownership or tenure). This can arise from financial difficulties or from the need for help. It may happen that one has to sell the flat: ‘To pay the debts we had to sell the flat for a very low price.’ This situation being more and more common is even more disastrous when it happens to the marginalised and stigmatised.
For the maintenance of a flat or a house money is needed. Instances are known when people were moved to institutions because they could not pay the bills and social services did not have legal grounds to subsidise the costs – but they sent people to the hospital or an institution with much costlier fees. ‘An old woman who was able to take care of herself had such a slim pension that she could not pay the electricity bill. Social services not being able to pay the bill, arranged that she went to an old age home; regardless of the fact this was not woman’s choice, additionally – she was against it. In the home she just withered.’ The system of benefits allows the municipality to pay for living in the institution, but cannot pay the bill.
The tenure could be revoked by a landlord because of the neglect of the property. Labelled people often do something wrong and the label has a double stigmatising effect. Firstly, it augments the offence, then the label attracts the allegations for everything that goes wrong in a block of flats. ‘A young man with a drinking habit and dynamic social life gradually became a culprit for everything that went wrong: broken switches, puddles in the hall. Even when he was not there. When he was hospitalised the tenant’s council gave his bedsit to one of the tenants to resolve the housing problem of his daughter. Coincidentally, this was the tenant who was most vocal in the proceedings.’ The coalition of exclusion has won – not only has it excluded the ‘enemy’ but also made a profit out of it.
Help with maintenance
People also need help with painting a flat, putting in furniture, cleaning etc. This need is obvious with people in wheelchairs and those who cannot see. Maintenance is not only important for maintaining the tenure or ownership but also as a means of personal representation and self-image, often also in terms of competence (being able to do something) and feeling well in a neat environment (Oakley, 1974). Such help can be provided by neighbours (e.g. they help an older lady who lives with a partner in a wheelchair – painting, chopping wood, cleaning the flat, shopping). Similar help can be provided by formally organised volunteers or paid home help. On the other hand some people want to have their own order or disorder, and do not want others to clean for them. This too is important for the feeling of independence and for being able to make decisions.
Often users with long-term distress or disability fare badly in some events concerning the ownership or intent of use of the property (divorce, shared ownership, privatisation, adaptation, resettlement because of the change of the nature of the property). Especially women who have experienced violence when separating from or divorcing their partners find themselves in hardship – it often happens that they have to leave the house or flat and wait for a court order although they are co-owners or even the rightful owner of the property: ‘I have a lot of problems with the flat. My mother would not let me come home even if my partner kills me. I have to sue for my rights – courts should act promptly and quickly in such urgent matters – because my partner is evicting me.’ Waiting for justice is easier for those who are not in need, who have money, have somewhere to go and have friends to support them.
Having a home is often lost in a divorce or in order to keep it, people need to pay a high price that causes mental distress: ‘At the moment I have no housing problems. But I had them in the time of my divorce, then my husband was extorting me. To retain the right to stay in the flat he was harassing me for some time, mostly to have sex with him.’ Men, especially when divorce is based on their stigma (of being mentally ill, drug user, offender) or because of chivalry and letting the flat to the ex-spouse are likely to end up homeless. Often they do not know how to deal with the new circumstances.
Besides effective legal support and advocacy (which are often insufficient) a measure of positive discrimination is needed to protect their interest (provision of accommodation in the process of divorce, change of ownership, priority and advantage when contending for the social or non-profit housing, etc.). It often happens that women with experience of violence or men who get stranded, find themselves in a situation where they cannot actually live in a house that they share but on the account of the ownership cannot qualify for social housing or even income benefit: ‘I am owner of a quarter of a house, that is about 80 square meters of the living space. My brother who is a co-owner of another quarter has been hounding me since 1983. I was in a women’s shelter in 1997, then got a council temporary bed-sit and in 2002 I got a council flat, but it was taken away from me due to an anonymous report. This I cannot understand. Already when applying I made a statement that I need the flat only until the division of the property and that I will give the flat back after. From a friend working in the borough I learned who filed the report. I wonder how one person can have such a power to take away the basis of my life.’
Besides formal there are also informal solutions. Younger users frequently spend nights with friends and acquaintances, in the students’ dormitories. This nomadic style has its toll – often in mental distress. The nomadic periods are interjected with periods when a person can afford to pay the rent for a room or a flat or ‘coming back home’. Some are bound to their homes. Older users settle as a guest or a room-mate with a friend, co-worker, a person from his hometown or with somebody who he met in the hospital. These solutions can be, in a given situation, very effective, because they are at hand and quick, and because they have an element of mutual support and of solidarity. Their disadvantage is that they are very vulnerable.
As in the case with all similar cohabitation, especially if one room-mate depends on the other, it can easily happen that there will be conflicts, resentments and discovering of not being suitable for each other in temperament, character, habits and styles. One of our informants has for instance decided to live with a female friend that he came to know in hospital, despite the fact that social services were making an effort to provide accommodation. Soon he was back in hospital and the room-mate was instrumental in his hospitalisation. This has torn their trust, and although they are still seeing each other they do not live together. Now he regrets not getting a flat in the first place.
Problems of such solutions is the contradiction between the symmetry peer relationship and asymmetry of the relationship of the landlord and the tenant (Danny in the Tortilla Flat is happy when he ceases to be a landlord). The contradiction of ownership and dependency are usually somehow resolved by married couples, by the virtue of being an economic and social unit, but are almost unsolvable when two independent individuals find themselves in such an arrangement.
A need for special spaces
Some service users need special spaces defined by special intention (e.g. temporary residence) or by special equipment or services provided.
Resettlement from an institution is a typical example for a special intermediate space that enables the resident to get to know his (forgotten) desires, interests and potentials. Simultaneously, it enables a transition from institutional into ordinary patterns of everyday life, to learn new skills and start organising a new life.
Intermediate space as a temporary solution is needed also in times of crises. People with long-term mental distress living in the community need spaces to live through a crisis in an ordinary setting (crisis centres, other families, holiday houses, etc.), where they could, as much as possible, preserve their ordinary everyday life. For the time being, hospitalisation (usually lasting longer than it should) is the most used option. Besides the crisis spaces, there is a need to, with the help of others, recover, come to their senses, regain their faculties (e.g. after head injuries, after a crisis, after long-term institutionalisation).
The carers of people with long-term care needs also need respite from family conflicts, from burning out. For this end, respite care accommodation is needed (e.g. for holidays) as well as shelters or retreats in case of conflicts at home (to enable escape, exit and disengagement to users as well as their carers).
People who are not able to live completely independently (e.g. people with dementia, severely physically or mentally disabled, etc.) would need ordinary spaces where care can be provided (supported housing) that would be equipped with security and connected to the centres of care. Because of the disability, be it sensory, mobility or mental (e.g. dementia) people need spaces adapted to their needs where they can arrange their home. A man who lost his sight describes:
At the moment I live in a bedsit in a community of blind people. In principle I could have a completely independent household. But this needs a financial input. My handicap is locking and unlocking doors. This could be resolved by an electronic lock. This is costly and I would need a sponsor. The other thing is that electronic means of communication are, for me of vital importance; I cannot read or write otherwise. Other adaptations, I need, are just minor, used probably by everybody every day.
A flat adapted to special needs is a necessity of independent living – special toilets, rails to hold, shelves at the appropriate height, sliding doors, table of an appropriate height, etc. are small things that make some difference. An adapted flat that makes an outing possible, extends the social life.
Housing and care
Whenever we meet someone, especially a friend that we have not seen for a while, we cannot but ask – where do you live? Seemingly the answer is a simple one, in our society a home is something that one simply has. It is not only a need, but also a right, undeniable, part of the Declaration of the Human Rights. (Mandič 1999, p. 6)
However, this right has been denied to the most vulnerable people and a simple question difficult to answer is: 'what is your address?’ It is not only the shame that makes it difficult, embarrassment that would be caused by an answer such as: ‘I live in a hospital.’, or for that matter in a care home, homeless shelter, on the street, for a time with my friends, or shyly mentioning that one is still living with the parents. It is also a fact that even if these are long-term arrangements, in effect they are provisional by nature. These are not places that are mine, that I occupy by my personal right, they are not places of my own, they are places where people are put in, parked, meaning that they could be moved at anybody’s convenience, transferred, trans-placed. It is not only a symbolic shame about what the place is about, it is also a direct shame of losing a ground, of having no place, nowhere to stand on, with no footing. It is a real, almost material, (de)base of the stigmatic discretisation. Long-term service users are nomads par force, diasporic people pushed out into nowhere places, not proud tribes looking for a better pasture.
If not proud, still nomads, their stories show how our dwelling, no matter how firmly physically constructed, is socially a precarious2 construction. A precarious dwelling by not having a permanent one may result in a precarious formal identity – not only by not having a bureaucratic peg to hang a virtual identity on but also by the virtue of not having a spot to be found at. Not having a house prevents us from storing our stuff, which also has the function of an identity kit – what we dress, what represents us, what we own, the remnants of what we did, all this is part of how people see us and how we perceive ourselves in their eyes. Home is also a place of sociability, place of visits and place of family life – if we cannot invite someone to our place – hanging out together is superfluous and uncanny if there is no pending invitation. At last, and not at least, living in the open or closed public spaces deprives us of our privacy, a place to be and to do what we cannot be and do in public.
Having intimacy is not only about the pleasure we derive from it (or in it), but also a stronghold of feeling ourselves. Not only that it is a dialectical necessity to have the backstage in order to perform the public image, but it is also a re-treat from various public spaces and also a starting point – we need a space to prepare to go out and a place to turn into, we can invite people to pick us up at our place before we go out or to bring us back and have another drink at home. Not having an intimate space, we do not have a base for our public operations. In the triad of public space, workplace and home (intimate space) home is a base and constituent of the other two.
The accounts we collected witness to the fact that having a home, a place to be, cannot be taken for granted, but is a vulnerable and precarious entity. But they also point to the imperative that an abode is not a luxury but a right. If a home, a flat is a prerequisite for being a part of society, then everybody should have it. On the other hand, if the flat is a luxury that one can only provide by producing it, owning it, then the weakest members of the community will always be excluded. One could argue that either we change society so that having a flat is not a necessity for being human or, in order to be really democratic, provide places for everybody.
To postulate that a home should not be a necessity (but neither a luxury) is probably as utopian as planning that everybody should have a home of his own. In fact, a just society should have both options opened and accessible – anybody who needs a space of his or her own should have it but it should cease to be a prerequisite for membership in society. Total accessibility of homes would mean that to have a place of one’s own is not a discriminative feature of a person, it would negate it as a necessity. The stories heard from people in housing distress indicate that there are other solutions to it. Staying with friends, living with others and having a temporary residence fully available. These are the solutions that can materially replace one’s own place. A question for social work, but also a cultural enigma in itself, is how to construct a viable and valuable identity in such an arrangement.
When one loses his or her home in this society and culture he or she faces two alternatives: one is either to be put into an institution or they may live on the street (for the sake of argument we have ignored the intermediate solutions like staying with friends, prolonged family dependence etc.). Both are destructive to the personality and well-being of the person and an impossible choice. We have seen that the institution, even when it is meant as the solution to the problem of homeless, produces more problems than it repairs. A person experiencing the loss of a home needs a place to regroup and rebuild the vessel. In other words, somebody needs a friendly place to stay and resources to rebuild the home (whatever that means to the person).
We have seen that it is sometimes impossible to tell which was first – a problem with a home, or some other distress (e.g. mental, financial, in relationships). Not being able to care for a flat is a sign of both mental illness as well as a pretext for expropriating the person of their tenure. However, being in an institution disables a person from caring for their home, declares him or her to be an inept home owner or a tenant and as a consequence, cements him or her to the role of mental patient or one in need of care. Both getting a label and losing a home greatly diminishes the contractual power of a person, disabling them from being virtually and actually competent both in maintaining a home as well as being a credible partner in interactions with others.
A very obvious way out of this circle is to provide a flat, a place to be. Less obvious is the help and support in maintaining the flat and even more mysterious is how to deal with devaluing labels and roles. One is part of housing policy and provision, another of social care and the latter of social work. Housing policy, therefore, should be amended so it can provide housing (based on rights not on eligibility) both in terms of making housing stock ready and available through positive discrimination and enabling access to it. Operative schemes of creating the housing stock and care should be designed. These should include possibilities for a cooperative effort in providing housing and providing care. Such a cooperative would be a safeguard against expropriation of the housing. But it would also contain, the care element, caring relationships not based on pure market exchange or on the state dependency and charity. The membership could be a mixture of property ownership, services provided and (public) resources for care.
Institutions, as they are now, may be hiding the extent of the housing problems (hidden homelessness), but they are, as it was pointed out, not resolving them, on the contrary they add to the distress. The long stay institutions, which are now paradoxically prevalent, should be substituted by temporary, transitional accommodation – shelters, halfway houses, even runaway houses are needed to bridge the time where there is a residential vacuum and resources provided including people who can help re-establish independent living after such a crisis. Long-term support is needed only for the maintenance of independent living.
An entitlement to a home should be a voucher put in a crib when one is born in order to help the people to live with others and be themselves.
 Declaration of human rights, International Covenant on Economic, Social and Cultural Rights, Istanbul Declaration on Human Settlement – UN Habitat, European Social Charter and Convention on the Rights of Persons with Disabilities.
 In this instance 'precarious' is a term that echoes Goffman’s concern of precariousness of identity and of organisation of experience in human interaction, but also a contemporary concern of our existence, of precarious employment, housing, well-being in general.
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1 Correspondence to: All authors, Faculty for Social Work, University of Ljubljana, Topniška 31, 1000 Ljubljana, Slovenia; Vito Flaker tel.: + 386 1 280 92 60, e-mail: ; Vera Grebenc tel.: + 386 1280 92 49, e-mail: ; Tadeja Kodele tel.: + 386 1280 92 67, e-mail: ; Jana Mali tel.: + 386 1300 62 32, e-mail: ; Mojca Urek tel.: + 386 1280 92 48, e-mail: .