Cripping time in eldercare: waiting for the home care service

ABSTRACT

Through an ethnographic study of older people’s experiences of the home care service organised by a large Swedish municipality, this article shows how care users are affected by the neoliberal governing of eldercare and of age itself. The article explores how fragmentation and standardisation, driven by the quest for cost reduction, redirect the time and needs of care users so that they align with market logic. One of the central experiences of the interviewed care users is the day-to-day uncertainty of waiting for the home care service, with the consequence that the care user’s bodily integrity and self-determination are compromised. Drawing from a theoretical framework of the sociology of time, care ethics, and critical disability studies, five different time-regimes are identified: clock-time, care-time, everyday-time, body-time and crip-time. The article argues that the concept of crip-time needs to be added to the analysis; it captures overlooked aspects of bodily temporality that are crucial to conceptualise for understanding what the effects are when the needs of ageing bodies are measured according to ableist assumptions and the neoliberal premise that all forms of time can be streamlined.

ABSTRAKT

Den här artikeln närmar sig väntan genom ett etnografiskt material kring äldre kvinnors situation som användare av hemtjänst i en svensk storstad och analyserar hur omsorgsanvändarna påverkas av den nyliberala styrningen av åldrande och äldreomsorg. Artikeln undersöker hur fragmenteringen och standardiseringen, som drivs av en jakt på kostnader, omformar användarnas tid och behov enligt en marknadslogik. En central erfarenhet hos omsorgsanvändarna är en daglig osäker väntan på hemtjänstarbetarna, med konsekvensen att användarnas kroppsliga integritet och självbestämmande kompromissas. Med utgångspunkt i ett teoretiskt ramverk bestående av tidssociologi, omsorgsetik och kritiska funktionalitetsstudier, identifieras fem olika tidsregimer: klocktid, omsorgstid, vardagstid, kroppstid och crip-time. Artikeln argumenterar för att begreppet crip-time behöver läggas till i analysen av omsorg; det fångar grundläggande men osynliggjorda aspekter av kroppslig temporalitet som behöver belysas för att förstå effekterna av en äldreomsorg där åldrade kroppar mäts enligt ableistiska antaganden och den nyliberala premissen att all form av tid kan strömlinjeformas.

KEYWORDS:

• Neoliberalism
• eldercare
• Sweden
• crip-time
• feminist care ethics

NYCKELORD:

• Neoliberalism
• Äldreomsorg
• Sverige
• Crip time
• feministisk omsorgsetik

Introduction

This article gives insight into the neoliberal governing of eldercare and of age itself in a Swedish context. From the perspective of older female users of home care service (HCS), the article explores how fragmentation and standardisation, driven by the quest for cost reduction, redirect the time and needs of users so that they align with a market logic.

Many feminist care researchers argue that one of the most evident effects of the neoliberalisation of eldercare, and HCS in particular, is a changed approach to time (Andersson, 2007; Tronto, 2003; Tufte & Dahl, 2016; Tufte, 2013). Studies about the neoliberal steering of time in eldercare have mainly focused on what effects it has had for the caregivers relating to time deficits and stress; rarely has the topic been studied from the standpoint of users (Andersson, 2007). In research where a user perspective is applied, a lived experience defined by uncertain waiting for help has been identified as one of the central effects of fragmentation and time compression (Andersson, 2007). Waiting for home care has also been analysed as an expression for a lack of control and self-determination (Wikström, 2005; Morris, 1993), as a reason for feelings of meaninglessness and hopelessness (Andersson, 2007), and as an accepted fact, indicating the demand to adapt to the routines and goals of the care organisation (Twigg, 2000). Previous research has analysed waiting and some of its effects, but attention to waiting is still scant, especially the bodily experience of waiting. This article contributes with an analysis of how waiting becomes a part of the embodied everyday experience for users of HCS, how it results in a vulnerability around one’s needs, and forces users to take responsibility over their own care. Two inseparable elements of neoliberalism are illuminated; the temporal governing of austerity and the idealisation of the autonomous active citizen (Dhal, 2012).

Drawing from a theoretical framework of the sociology of time, care ethics, and critical disability studies, I identify five different time-regimes: clock-time, care-time, everyday-time, body-time and crip-time. Through an analysis of empirical examples, I show how the dominance of clock-time is maintained through the marginalisation of the other four time-regimes. I argue that the day-to-day uncertainty around waiting for help is a major constraining condition from the user perspective, where their bodily integrity and self-determination as a consequence are compromised. The article makes a strong case that the concept of crip-time needs to be added to the analysis (Kafer, 2013). Crip-time – the time-experience of disability – captures overlooked aspects of bodily temporality that are crucial to conceptualise for understanding what the effects are when the needs of ageing impaired bodies are assessed according to standardised measures influenced by the norm of non-disability and the neoliberal premise that all forms of time can be streamlined.

Context of Swedish eldercare

The overall aspiration of Swedish welfare services, including eldercare, is to be available to all citizens according to need: comprehensive, publicly financed, mainly publicly provided, and of high quality (SFS, 2001). Municipalities organise eldercare and the most common care form is the HCS. Since the 90s, the goal is to ‘age in place’, meaning that older people should be able to continue to live at home even when dependent on help. In order to receive HCS, one has to apply for an individual assessment of needs based on one’s ability to manage everyday tasks. If approved, you can be assisted with all forms of personal care as well as domestic tasks.

The Swedish welfare system has been widely characterised as a universal welfare system, a reputation widely cemented in both academic and popular culture, with the Nordic model being described as the most generous welfare state in the world (Norberg, 2019). As Ida Norberg (2019, pp. 49-50) writes, in the repetition of this common narrative, the changeover towards neoliberal austerity is expelled. In fact, in no other comparable country has this social change been more substantial than in Sweden (Norberg, 2019). This can be seen in all welfare areas, but eldercare has been identified as at the forefront of neoliberalisation: or as Kamp and Hvid (2012) put it, ‘a testing ground for neo-liberal management’ (p. 14). The former ideals of a universal and cohesive eldercare are partly ripped up and woven into new patterns directed by New Public Management (NPM) and its hunt for cost efficiency.

Two neoliberal reforms that have transformed Swedish eldercare in this direction are the purchaser-provider model, introduced in 1992 (Larsson & Szebehely, 2006), and the Act on Free Choice Systems (SFS, 2008). In both legislations, the free market and freedom of choice are dominant values. The purchaser-provider model primarily emphasises the right and ability of municipalities and companies to compete and operate in the free market, while the Act on Free Choice Systems has a stronger focus on the consumer’s right to choose their own care provider. Increased freedom of choice and self-determination for the users, which these reforms were motivated by, have so far shown to be absent (Duner et. al., 2019). Instead, the consequence of the neoliberalisation is a fragmentation of care, where the different services are divided amongst several different units (Larsson & Szebehely, 2006) – municipality-driven and private as well as charity organisations. In HCS, where the expectation is that users are more independent than in e.g. assisted living facilities, the fragmentation creates complex networks of care providers for those dependent on help and support to deal with, and often it seems, to adjust to. In this article, I analyse uncertain waiting as an effect of this fragmentation, arguing that it is a significant constraining condition that circumscribes the users’ bodily integrity and their ability to control their own lives.

However, as Dahl (2012) points out, neoliberalism is not only institutional but also has effects on the subjective level, working like an emotional regime fostering ‘proper and recognizable behavior’ (p. 285), where the active citizen is a normative principle. Consequently, a new understanding of what it means to be old challenges the hegemonic discourse of old age as decay and reliance on care: older people are now constructed as active and productive consumers and in the context of healthcare. This activation ideal and discourses of individualised responsibility tend to be applied over health and care needs, where people through self-discipline are expected to stay healthy and active (Alftberg & Lundin, 2012).

Theoretical framework and former research

Sociological researchers studying time have argued that the dominant temporality in the western world is defined by the sphere of production, where clock-time, counted in minutes, hours, and days, is the rule (Adam, 2004; Davies, 1989). There is reason to argue that the dominance of clock-time has been even more intensified in the neoliberal paradigm where activities like healthcare and education, which were held outside the market logic of production in the social democratic welfare state, are now increasingly governed by this same regime (Therborn, 2020). Clock-time is, however, not the only way to relate to time; care has its own temporal rationality and the same can be said about lived experiences and bodily existence (Adam, 2004). In this section, I will discuss the relationship between clock-time, care-time, and body-time in feminist theory and care research. I will argue for disability as a missing, but needed, perspective for understanding time from the care user’s perspective – crip-time.

Care-time

Karen Davies (1989) argues that care-time follows a cyclical rhythm defined by the care work associated with women, contrary to clock-time, which is linear and relates to traditionally male interests, like productivity. While the time of production is predictable and adaptable to a precise and efficient schedule, care-time is by definition irregular and process-like, because needs for help vary from day to day and unexpected situations can occur (Davies 1994, p. 281). Feminist care research is heavily influenced by feminist care ethics and the definition of care as a universal value, in which human vulnerability and interdependency are highlighted, and as a relational practice characterised by ‘attentiveness, responsibility, nurturance, compassion, meeting others’ needs’ (Tronto, 1994, p. 3). Despite feminist care research’s pronounced focus on the care recipient’s needs; care is rarely studied from the user’s perspective. This is also the case when feminist care researchers have explored time: it is mostly done from the standpoint of the caregiver around the lack of time and stress, concluding that women’s care work cannot be measured according to the linear time of the clock (Tufte & Dahl, 2016; Tronto 1994; Tufte, 2013). In disability studies, there is a criticism towards feminist care ethics for its tendency to give interpretive precedence to the caregiver, casting the user as a passive receiver and overlooking the oppressive sides of care in its romanticising of the caring practice (Kelly, 2016). The user perspective needs to be further developed in feminist care research and, along with other scholars, I argue that when doing so, caregiver bias needs to be scrutinised through a disability studies lens (Hughes et al., 2005; Kelly, 2016; Wendell, 1996: Twigg 2000).

Everyday-time, body-time, and crip-time

In her influential work on bathing in community care, Julia Twigg (2000, p. 94) argues, with the purpose of understanding the temporal aspects of home help from the user’s perspective, clock-time and care-time need to be accompanied by the rhythms of the body and the regularities of our domestic life. Adam (2004, p. 116) says that clock-time, steered by values of efficiency and speed, assumes a neutral universal relation to time, when in fact our sense of time is marked by difference. This is crucial and, in relation to impairment, I argue that it is important to recognise that bodies not only have different rhythms, but that they are also valued differently.

Alison Kafer (2013) uses the concept crip-time to describe the experience of time for disabled people, as stipulated by the impairment as well as ableism. Time according to non-impaired bodies has a greater opportunity to adjust to the dominance of linear clock-time, which needs be taken into account in relation to care. For people who live according to crip-time, there is a need for more time, but also a greater flexibility and reinterpretation of what should happen during a certain time (Kafer 2013, p. 27). Applying a crip perspective means analysing and scrutinising the norm from the position of the so-called deviant. Kafer (2013) writes: ‘Rather than bend disabled bodies and minds to meet the clock, crip-time bends the clock to meet disabled bodies and minds’ (p. 27). Crip-time is therefore a way to emphasise a certain kind of difference within body-time, marked out by physiological and mental specificity as well as social barriers.

Carol Thomas (1999) states that impairments have effects on how and what we can do, but that these impairment effects always interact with social arrangements and practices that exclude and disadvantage disabled people from full participation in an ableist society. This implies that what we can do and be, based on our mental or physical ability, and likewise what we are prevented from doing and becoming, is thus a matter of justice. From this perspective, adequate care, in the sense of help and support, becomes a means for the ability to control one’s everyday-time and making participation possible; and thus the access to care stands in relation to social rights. Moving care and assistance from the private issues of domestic life to a matter of policy and full participation in society has been one of the central issues for the disability movement connected to justice (Thomas, 1999). Inspired by Twigg’s concept domestic time and the disability perspective’s insistence on the user as an active co-creator of care, I define everyday-time as the time when personal routines, spontaneity, interruptions, and recovery take place; the time that constitutes our living space, our self-control, and the time outside the production of goods and services, whether it is after the workday or, like the case of my informants, after retirement.

Feminist care research needs to be held accountable for its care-giver bias, and the disregard of help and support as means for the social rights of the user. What feminist care research brings to the table is the recognition that care is a relational practice and that dependence and differences is central to the human condition, circumstances that I argue become even more important to safeguard in relation to the neoliberal ideal of the active citizen.

Method and empirical material

The research material informing this paper consists of participant-observations conducted in the homes of older female users of municipal HCS. This is a sub-study of a qualitative project carried out between the years 2014–2017, focusing on ageing and eldercare from the perspective of older people in a large Swedish city (Palmqvist 2020). The informants of the sub-study are between 69 and 90 years old and are in total five women; two of them lived with their husbands and these men also gave their consent to take part in the study. The participant observations took place during and in-between the visits by the care-workers, at two to four occasions with each informant/couple, where the act of waiting was a central part of our encounters. I often arrived at the informants’ homes a bit earlier than the care-workers were expected, meaning that it was in times of waiting that I took part in the stories and meaning of waiting. I argue that the users of eldercare have a vantage point in an inquiry about the organisation, practise, and values of care. Like Tronto (1994, p. 108), I argue that it is from the perspective of care-receiving where we can estimate if care needs have been met. By examining the complex temporal aspects of HCS and how different time regimes play out and affect people’s living situation, we can gain knowledge about what these services entail, but also what is required for them to be good and fair. Secondly, I argue that older women’s perspective is a particularly relevant site from which to start such a project. This is because women are users of formal eldercare at higher numbers than men. In Sweden, about 170,000 persons over the age of 65 have HCS; 65 percent are women (Socialstyrelsen, 2019). Studies have indicated that women get less support in relation to their needs in comparison to men (Andersson, 2007; Malmö, 2013, SALAR, 2021). The elder women in this study contribute their embodied experiences to these statistics and indications, a perspective which has seldom been the focus in research (Palmqvist 2020). The experiences of older women are important, not just because they reveal something about older women as a social group, but because they reveal something about the power structures that organise our lives (Smith 2005).

Ethical considerations

Ethical approval for the study was given by the Regional Ethical Review Board in Gothenburg, Sweden (Reg. no. Ö 18-2016) in accordance with the Act Concerning Ethical Review of Research Involving Humans (SFS, 2003:460).

Uncertain waiting – analysis and discussion of the findings

Waiting can be said to be one of the basic conditions for the type of support that HCS constitutes; the care workers have a number of persons to visit according to a set time schedule, going from one to the next, and the user needs to be prepared to accept the help when the worker shows up. These terms are what the municipality refers to in their Dignity Guarantees when they write ‘You should be able to plan your day and know when you will receive support and help from staff in the home care service or healthcare’ (Gothenburg n.d.). What my study and former research show, however, is that the waiting is uncertain – meaning that the users often do not know exactly what time they will receive help. As Andersson and Sjölund (2020) state in their article on dignity in night-time care, there is reason to believe that there is a gap between policy and practice when it comes to the local and national policy goals of dignity, and what causes this gap is often the time steering of the organisation. In this section, I analyse waiting from the users’ perspective, as well as how it’s stipulated by the conflictual time regimes of clock-time, care-time and crip-time, as these relate back to the neoliberal temporal governing of HCS.

Expected uncertainty

Policy aspires to give users daily updates about schedules and alterations but, according to my informants, in practice, they seldom get this kind of information. Katharina, 85 years old, reflects over how she deals with the uncertain waiting that results:

I’m telling you, the home care service doesn’t work. They were supposed to be here in the morning to help me put on the compression stockings and, if necessary, wash my foot, which has a wound that is infected. When they arrive at half past nine, don’t think I’m sitting there with my foot waiting! So I’ve figured out how to deal with that myself.

Like Katharina, all my informants experience great frustration over the uncertain waiting for help. Katharina’s solution to the problem is to find a way to compensate for the missed-out help by performing the care task herself. At the following participant-observation, however, it emerged that this often results in her rejecting the help and not using the compression stockings at all. When it comes to meal help, Katharina deals with it in a similar way; she has announced to the HCS beforehand that she prefers to opt out from the assigned visits in the morning and at lunch. She explains that she and her husband want to eat when they feel hungry and not when it fits into the schedule of the HCS, even though this means eating something like sandwiches for lunch. When it comes to more demanding tasks like cooking, cleaning, and making the bed, they simply have to endure the uncertain waiting.

Katharina and her husband expect that the HCS operate according to their everyday-time; when it doesn’t, they try to perform the tasks themselves, according to their ability. This type of required self-responsibility for one’s care needs is recurring in my material.

According to the new activation principle, it could be argued that it is positive that users perform tasks themselves as much as possible, as a form of ‘help to self-help’ (Dahl, 2012, p. 285). To describe Katharina’s actions as a positive sign of active ageing, however, is to mischaracterise the situation. Katharina has an acquired mobility impairment that has increased with age; she uses a walker to move around the apartment. Her husband reported that he worries she will fall when she works in the kitchen and indeed this happens at a subsequent participant-observation: Katharina falls while doing kitchen chores (luckily, this time, without injury).

Compression stockings are a treatment for oedema, to prevent liquid from accumulating in the tissues of the legs, which can lead to pain and reduced mobility (Todd, 2013). Compression stockings also have a helping effect in wound healing and it is important that they be put on correctly by trained staff to avoid creases and lumps that can lead to pain (Cunha, et al., 2017). Furthermore, forgoing the compression stockings can have significant ramifications. Katharina’s independent decision not to wear compression stockings and to perform housework herself increases the risk of accidental falling, and what could be described as increased self-determination could actually risk increasing impairments due to lack of support. In general, men tend to be privileged in the assessment of HCS for covering domestic chores, except if they live together with a woman, who then is implicitly expected to perform those chores (Malmö, 2013; SALAR, 2021). Given the commonly gendered division of housework, something relevant in Katharina and her husband’s situation, highlighting the unequal assistance assessment, and alongside the higher proportion of women with oedema (Todd, 2013), there are reasons to argue that the overrepresentation by women in the numbers of accidental falls (Socialstyrelsen 2020) needs to be scrutinised through a gender equality lens.

Katharina and her husband are an example of how the superiority of clock-time opposes self-determination, in the meaning of having control over one’s everyday-time, and how in the absence of self-determination, it engenders destructive self-responsibility.

Clock-time, in a neoliberal regime, subordinates other types of time, such as care-time and body-time. This is evident in care workers’ situations, where the constant time deficit forces them to bridge the conflicting goals of the organisation: neoliberal time-steering and flexible care-time. Led by their work ethic, care-workers try to meet the promises about flexible time made to users in the dignity goals, fighting the clock to decrease the gap between policy and practice. This is evidently an impossible task because they can only give flexible care-time to one user, affirming that person’s everyday time, if they take it away from another (Andersson, 2007).

Unexpected waiting

The juggling task for individual workers to sustain care-time is even more apparent when it comes to the second form of waiting that characterises the everyday for HCS users, namely unexpected waiting. This is one of the circumstances revealed in the home of Gunnel, an 85-year-old living alone. What this empirical example illustrates is the collision of clock-time and crip-time – where it seems like impairment effects are cast as deviations in the scope of the neoliberal time regime.

When I arrive at Gunnel’s apartment early one morning, she has just eaten her breakfast and is waiting for the care-worker to assist her. She apologises to me for not offering me coffee. She explains that the more she is up and walking, the more her legs swell up, which is why she usually prepares coffee after the care worker has helped her put on compression stockings. While waiting, Gunnel tells me how much the care workers mean to her and how grateful she is to have them. ‘She comes in here like a ray of sunshine’, she says about the expected care worker, Susanne. The phone rings and Gunnel tells me that it was Susanne who has called to announce that she will be late because she has to wait for an ambulance with another user who suddenly fell ill. Gunnel says that she would not mind waiting if her legs were not swelling up more and more. She wants to make me coffee anyway and we walk to the kitchen. She starts preparing it, but after a couple of minutes, she excuses herself and sits down to rest.

The girls usually do this while I sit here like this. It is unfortunate that it happened like this on this exact day when you are here; me with my oedema and her with her ambulance.

The unpredictable event of someone needing an ambulance stands in opposition to a predictable event: Gunnel’s legs that are slowly filling with liquid and swelling up. The question that needs to be asked here, though, is whether this event can actually be defined as unpredictable? Every informant described recent situations where staff have come late due to similar events. In light of their experiences, I argue that situations where a person falls ill, or for some other reason requires extra time, should be redefined: from unexpected to expected in accordance to care-time and crip-time.

Davies (1989) argues that care-time is irregular and therefore not possible to meticulously schedule according to a linear temporality. This can be put in relation to how impairments have been described in disability studies as dynamic, contingent, and fluctuating over time, a contrast to how disability is constructed and handled by the dominant ableist gaze of medicine: as ‘fixed difference’ (Campbell 2009, p. 145). Disability as fixed difference is an approach that harmonises with the standardisation that eldercare has undergone as an effect of NPM. HCS are temporally ruled by clock-time, meaning that there is no scope for crip-time, in the sense of extra time or flexible time, and neither then can the irregularity of care work be recognised. If the HCS organisation defined care by the varying needs of the user and the irregularity of care work, emergent hospital visits would not be understood as unexpected.

Why is there no preparation for these expected situations related to impairment effects, with for example extra staff on duty? My conclusion is that these events are simply defined as unexpected situations beyond the ordinary, and thus explained away, or vice versa, that they are defined as out of the ordinary, only to be de-prioritised. This time saving is made possible by casting impairment effects – and the crip-time they require – as deviations according to the neoliberal superiority of clock-time.

Embodied waiting – Cripping body-time

In this section, I analyse how dependence on help with essential body functions plays out in the neoliberalised HCS. I will focus on the bodily functions of urination and bowel movement, described by Twigg (2000) as body responses ‘less clearly defined socially in their pattern, [but] treated fairly freely as a response to body needs’ (p. 96). Due to the superiority of clock-time, the norm of considering the rhythm of the body in relation to excreting is shown to be exempted in HCS.

Full support from the HCS means five visits daily, at which time you have opportunity to go to the toilet. If you also have night-time care, you have two more chances for help. A person with full control over the ability to hold urine needs to empty their bladder, on average, five to seven times a day, but for post-menopausal women, the bladder’s ability to concentrate urine decreases, meaning a need to more frequently empty the bladder (Socialstyrelsen, 2016). Additionally, many of my informants take diuretics, which increases the need further. Holding urine can be harmful and can lead to infections and kidney-related problems (Oxfam, 2016). A person with impaired bladder function may not be able to hold urine, and, for these people, it is important to get to the toilet often:

People with various physical impairments or cognitive impairments may need help to get to the toilet regularly; sometimes it is necessary to have two staff members in order for the toilet visit to be effective. Through training to go to the toilet, people with incontinence can achieve continence and carry out toilet visits on their own. (Socialstyrelsen, 2016, p. 11, my translation)

The HCS does not currently have the means and time to achieve the goal set by the National Board of Health and Welfare and to support users to manage toilet visits on their own and achieve continence.

According to my study, this results in that people who can walk despite limited mobility, aiming to achieve continence, must get to the toilet themselves with the risk of falling. Another report (Socialstyrelsen 2014) states that a common reason why older people have to move into assisted living is urinary incontinence, partly due to an increased risk of fall accidents in the home.

One could argue that people that cannot manage daily life without the risk for fall accidents should move into an assisted living facility for safety. Yet first, there are two circumstances that need to be taken into account. The first is the downsizing of such facilities for older people, a change motivated by austerity and the ideological change of ageing in place, resulting in long queues to the few places available (Szebehely & Ulmanen, 2012). Consequently, many older people in Sweden, regardless of personal preference, have no alternative but to turn to HCS even if they have extensive mobility impairments and/or cognitive impairments. This is the case for a couple of my informants, who have not been approved for a space in an assisted living facility; others have been approved, but remain in the care of the HCS while waiting for an available apartment. Secondly, many older people regard life at an assisted living facility as a threat to their self-determination, and therefore do not see it as an alternative at all, as long as they have a choice. Previous research confirms that assisted living facilities for older people mean extensive interference with the resident’s self-determination and a requirement to adapt to the routines of the organisation (Harnett, 2010).

Older people who are living at home but who cannot take on the risky self-responsibility to go to the toilet without support must, if they are to achieve continence, adapt their bodily needs to the care visits. As previously mentioned, this is in fact both unreasonable and harmful. The only actual alternative for this group is using diapers when the HCS is unavailable to accompany them to the toilet. Such a pragmatically formulated alternative sounds harsh and is a reality far from the self-determination and individualised care stated in the national dignity policy for eldercare (Socialstyrelsen, 2012:3). Earlier research regarding nursing home practices indicates that diapers are a common alternative to accompanied toilet visits in nursing homes (Erlingsson et al., 2005; Lill, 2006) and according to my study, this is also the case in HCS (Palmqvist, 2020).

Notably, the figure for the highest number of home care visits per day coincides with the lower limit for how often a normally functioning bladder needs to be emptied: five to seven times a day. A body with impaired bladder function due to natural ageing, disease, or medical treatment, follows another pace. When connected, these two circumstances indicate that when the HCS is considering body-time, it does so in relation to the normative non-impaired body.

Even if visits from the HCS were more frequent, this does not guarantee that they would coincide with excretion needs. Marianne, who depends on an electric wheelchair, discusses this while we review her care plan. The care plan is a document that states the different assessed needs she has, an estimation on their time consumption, and an approximation of when in the day they are to be performed:

Marianne:

No, but you do not always have to go to the toilet at those times. Sometimes I can feel that it pushes and hurts a lot when the stomach needs to be taken care of. But when you are sitting on it it’s just not possible.

Lina:

Do you push the alarm button at those times?

Marianne:

No, I do not. I wait and put up with it until they [a staff member] arrives and then of course it does not always happen then.

Marianne speaks about the pain she experiences when she needs to have a bowel movement but is not able to see to that need. The HCS is not available when she requires it, and she explains that if she calls them with the safety alarm button, they usually do not arrive until half an hour later and then it is often too late regardless. Not being able to follow the bodily responses of defecation has led to constipation for Marianne and she has become dependent on laxatives. In the case of Katharina and Gunnel described above, the neglect of crip-time increased their existing mobility impairments, but for Marianne, it creates new impairments. The routines of the organisation of HCS have intervened in Marianne’s bodily temporality. When body-time is subordinated to clock-time, bodily processes like defecation are disrupted and hindered. In the regime of clock-time, laxatives become the solution instead of more frequent home care visits and a flexible support following crip-time. Administering an enema is efficient and can be planned, whilst the digestive system is part of the time regime of the body, and thus varied and unpredictable in its nature.

Concluding discussion

Analysing waiting in HCS from the perspective of users gives insight into how neoliberal clock-time circumscribes everyday-time, ignores the need for crip-time, and marginalises care-time. The uncertain waiting that characterises the everyday for users of HCS results in vulnerability around one’s needs. This leads to enforced self-responsibility, where users perform a form of self-care, attempting to compensate for the absence of support from care workers. This is far from the positive image of self-care given in the neoliberal discourse of active ageing, but rather a risky form of self-responsibility that can lead to a neglected care plan, fall accidents, injuries, and ultimately increased impairments. My analysis indicates that this destructive self-responsibility could weight heavier on older women, who more often live alone, are disadvantaged in the assessment of domestic chores, and traditionally perform housework to a greater extent than men in heterosexual relationships.

Waiting in itself can exacerbate pre-existing impairments, for example in the temporary mobility impairment caused by the delay of compression stockings. Waiting can also create new impairments, such as chronic constipation, which can be an indication of bodily reflexes being denied on a daily basis. The utilisation of medical technology and aids, such as the use of enema or diapers, can help adjust or alleviate these impairment effects. The neoliberal time steering enters and controls bodies at a primary level, where basic functions and processes are changed or stopped, and then adjusted to the dominant clock-time with the help of medical technology. This means that older disabled bodies and minds are bent to meet the clock, while crip-time is ignored (Kafer, 2013).

Like previous feminist care research, my study confirms that care-time has become even more marginalised in neoliberalised eldercare. One of the effects of this temporal governing from the users’ point of view is the lack of continuity: not knowing how long, or for whom, you are waiting. This can be argued, like in the local dignity guarantee, to be remedied if users get information about who is coming that day and if care workers show up on time. If the definition of dignity keeps to this narrow scope, clock-time can even be argued to be helpful for the users, indicating that the care workers’ flexible care-time disadvantages users and their ability to maintain control over their everyday-time. Before we can conclude that clock-time is in favour of the care users, we have to look into why arbitrary flexibility is created. Care workers can only give time to someone by taking it away from another in NPM care, as they are in a constant time deficit, caused by the rigid calculation based on clock-time. The room given to care-time is thus a cushion between the needs of the users and the neoliberal clock-time of the organisation. In order for care-time to benefit all users in a fair and equal manner – where both the routines of everyday-time and the unpredictability of crip-time are safeguarded – there needs to be a change in the temporal order at the organisational level. Only then can the full definition of dignity be realised.

In neoliberalised care, a view of time as an object or commodity to be sold or exchanged has been introduced (Kamp & Hvid, 2012). The users think about time from the position of their everyday and their bodily needs, where the most important things, concerning the help and support they receive, is self-determination and maintaining control over their own life. Elder care law and policy espouse commitment to these values, but regulations about dignity are toothless and seem to always be subordinated to cost-efficiency. As Andersson and Sjölund (2020, p. 11) write, the way the dignity policy has been implemented represents a contractual form of dignity and to claim these legislated rights demands active consumers of care, which is seldom the case when simultaneously dependent on care. The impairment effects that hinder the users to be active consumers, does not make them passive receivers of care; on the contrary, they are occupied with trying to navigate their need for help and support within the conflictual time regimes that condition their lives. The organisational level’s main concern, seem to be safeguarding austerity by rigidly following neoliberal clock-time. My conclusion, therefore, is that there can be no reconciliation of the gap between legislation and practice as long as the responsibility for these values and rights – and the care-time, everyday-time, and crip-time that is required for them to be actualised – is placed on the shoulders of care workers and users.

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Lina Palmqvist

Lina Palmqvist has a PhD in Gender Studies from Gothenburg University and is now working as a Senior Lecturer at the University of Borås, Sweden. Her current research focuses on the refamilisation of eldercare and special accommodations for people with disability, with perspectives on equality, gender, and diversity.