Coupling constraints affecting daily mobilities of Swedish families with wheelchair-using children

ABSTRACT

Mobility can involve many barriers that make it challenging for individuals with disabilities to travel. When it is a child who has a disability, the whole family’s mobility practices can be affected by those barriers since families’ mobilities are often intertwined. This paper is based on time-use diaries and interviews with parents of wheelchair-using children living in Sweden. A time-geographical framework is used in the paper, especially focusing on the concept of coupling constraints, which can emerge when individuals need to be together to perform an activity, such as mobility. The main focus is on how coupling constraints between parents and the disabled child affect mobilities, but the findings show that couplings also exist with authorities and things and these can increase coupling constraints within the family. However, if being eligible for personal assistance and special transport service the coupling constraints within the family can decrease, indicating that such support systems are fundamental for these families’ mobilities. This paper also shows that time geography can be useful for disability studies and add new dimensions to the relational perspective on disability.

La movilidad puede implicar muchas barreras que dificultan el viaje de las personas con discapacidad. Cuando se trata de un niño que tiene una discapacidad, las prácticas de movilidad de toda la familia pueden verse afectadas por esas barreras, ya que las movilidades de las familias a menudo están entrelazadas. Este artículo se basa en diarios de uso del tiempo y entrevistas con padres de niños que utilizan sillas de ruedas que viven en Suecia. En el artículo se utiliza un marco temporal-geográfico, centrándose especialmente en el concepto de restricciones de acoplamiento, que pueden surgir cuando los individuos necesitan estar juntos para realizar una actividad, como la movilidad. La atención se centra en cómo las limitaciones de acoplamiento entre los padres e hijos con discapacidad afectan la movilidad, pero los hallazgos muestran que también existen vínculos con las autoridades y las cosas, y estos pueden aumentar las limitaciones de acoplamiento dentro de la familia. Sin embargo, cuando se opta por asistencia personal y servicio de transporte especial, las restricciones de acoplamiento dentro de la familia pueden disminuir, lo que indica que dichos sistemas de apoyo son fundamentales para la movilidad de estas familias. Este artículo también muestra que la geografía del tiempo puede ser útil para los estudios sobre discapacidad y añadir nuevas dimensiones a la perspectiva relacional sobre la discapacidad.

Pour les personnes en situation de handicap, la mobilité peut impliquer beaucoup d’obstacles qui compliquent leurs déplacements. Quand c’est un enfant qui est handicapé, ces obstacles peuvent entraîner des répercussions sur les mobilités de toute la famille, puisque celles-ci sont souvent imbriquées. Cet article se fonde sur des journaux consignant l’emploi du temps et des entretiens avec des parents d’enfants en fauteuils roulants qui résident en Suède. On s’y sert d’une structure de géographie temporelle, qui cible en particulier le concept des contraintes de couplage : celles-ci peuvent apparaitre quand des personnes sont obligées d’être ensemble pour entreprendre une activité comme la mobilité. Il se concentre principalement sur l’effet que les contraintes de couplage entre les parents et l’enfant en situation de handicap a sur leurs mobilités, mais les résultats montrent qu’il y a aussi des couplages avec les autorités et les objets et que ceux-ci peuvent augmenter les contraintes de couplage au sein de la famille. Cependant, avec l’accès à l’assistance personnelle et à un service de transport adapté, ces contraintes peuvent diminuer pour la famille, et cela indique que ce type de système d’accompagnement est fondamental pour les mobilités de ces familles. L’article montre aussi que la géographie temporelle peut être utile pour les études sur le handicap et ouvre de nouvelles dimensions pour la perspective relationnelle sur le handicap.

KEYWORDS:

• Disabled children
• family
• mobility
• time geography
• coupling constraints
• time-use diaries

PALABRAS CLAVE:

• niñez con discapacidad
• familia
• movilidad
• geografía del tiempo
• restricciones de acoplamiento
• diarios de uso del tiempo

MOTS CLEFS:

• enfants handicapés
• famille
• mobilité
• géographie temporelle
• contraintes de couplage
• journaux consignant l’emploi du temps

Introduction

Mobility is important for shaping society, its inhabitants and their everyday lives. Having opportunities for mobility is fundamental for the realization of many activities, which are usually spread out geographically (Massey, 2005; Sheller, 2021). However, not all have the same possibilities for mobility. Research has shown that mobility can be challenging for people with disabilities, due to the existence of many disabling barriers related to physical and social environments (e.g. Bromley et al., 2007; Gaete-Reyes, 2015). When it is a child who has a disability, the whole family’s mobility can be affected (Landby, 2019). However, the literature in this area is still scarce and there is a lack of understanding of how mobility constraints affect the time-space opportunities of these families.

This paper aims to elucidate the daily mobilities of Swedish families with wheelchair-using children with cerebral palsy (CP) by using time-use diaries and interviews. The paper is delimited to focus on the parents’ experiences of mobilities, and their perceptions of how mobility works for the whole family. Children can have different views (Holloway & Valentine, 2000) and other experiences of mobility (Stephens et al., 2017). I focus on the parents’ experiences as they are often the ones that plan and negotiate mobilities with a family perspective in mind (e.g. Jensen et al., 2015; Tillberg Mattson, 2002). Moreover, the focus here is on wheelchair-using children with CP rather than children with other forms of impairments due to the specific effects that physical barriers can have on their mobility practices (Landby, 2019; Pyer & Tucker, 2017), and because CP is a lifelong disability leading to long-term challenges unlike those associated with a temporary injury (Colver et al., 2014).

In Sweden, a relational model of disability is usually applied. This perspective considers disability as a person-environment mismatch that is context dependent and where the impairment can become disabling to the individual if the environment is not sufficiently adapted (Ytterhus et al., 2015). I use the relational perspective on disability in this paper and when using the term ‘disabled children’ I refer to how a wheelchair-using child with CP can be disabled due to disabling barriers in the surrounding environment.

Methodologically and theoretically, I draw on the time-geographical framework. Within time geography, constraints to mobility are typically divided into three categories: authority, capacity and coupling constraints. Here, I focus mainly on coupling constraints, which emerge when different individuals and/or things need to be together (‘coupled’) in time-space to perform an activity (Hägerstrand, 1970). Coupling constraints are common in families, not least in relation to mobility Ellegård, 2018; Landby 2019). The paper thus contributes to existing research by applying a relational perspective on disability and a time-geographical framework to study mobilities of a previously neglected group.

Geographically, this paper is from a Swedish context, including the Swedish welfare system that offers support for families with disabled children, for instance in terms of state funded personal assistance (Miettinen et al., 2013). The socio-geographical context thus differs from much of the existing research in the field, where informal care within the family is more common (Arksey, 2002; Giesbrecht et al., 2016; Wiles, 2003). This is likely to affect the experience of disability, and caring practices as well as the time-geographical constraints that parents of wheelchair-using children face.

Background

A relational perspective on disability

There are different understandings of disability. Historically, a medical perspective on disability was typically used, in which the focus was on the impairment and how people with disabilities differed from the non-disabled (Gleeson, 1999). Medical understandings of disability still exist in society (Bylund, 2022; Norberg, 2019), but have been increasingly criticized over the past decades. Policymakers as well as the research community have increasingly used a social perspective on disability instead, where is it recognized that a person is not necessarily disabled due to a certain impairment or condition, but as a result of barriers related to an inaccessible physical and social environment (Oliver, 2004; Valentine, 2001).

While the social perspective on disability is preferable over the medical perspective, it has also been criticized for focusing too heavily on the surrounding environment and a lack of recognition of diverging bodily functions. Some challenges with living with a disability, such as pain or restricted bodily movements, do not disappear even if external barriers are eliminated (e.g. Schur et al., 2013). Therefore, a relational perspective on disability has emerged, whereby disability is understood as the complex interplay between an individual’s impairment and the social and physical environment. According to the relational perspective on disability, it is the combination of these that creates challenges for people with disabilities. With this perspective, disability is relative and context dependent and change over time and space (Hansen & Philo, 2007; Ytterhus et al., 2015).

Research within human geography has generally followed the same path as in the wider social sciences, going from the medical to the social and increasingly the relational perspective on disability (Imrie & Edwards, 2007). There has also been a shift from focusing mainly on physical barriers to a recognition of the importance of social barriers, as the combination of these can act to challenge and constrain the geographies of people with disabilities (Gleeson, 1999). Geographers have also paid attention to how different spaces are produced and reproduced, and how the production of space is imbued with power relations, meaning that some individuals and groups of people have less opportunities to affect and change different spaces (Massey, 2005; Sibley, 1995). Social processes can produce disabling spaces and affect the experience of living with a disability, especially when space is produced on the basis of ableist norms (Chouinard, 1997).

Time-geographical trajectories, projects and constraints

The time-geographical framework provides useful tools for elucidating the mobility patterns of individuals. According to time geography, individuals make up trajectories in time-space, where their paths show how they move about. Previous movements in time-space affect future mobility possibilities, for instance individuals’ geographical reach within the remaining time-span, and which activities and projects they can undertake (Ellegård, 2018). Time-geographical projects can differ in character, for instance being short or long-term. Projects can also be more or less fixed in time-space; sometimes people have to be at a certain place at a certain time in order for projects to be realized (Ellegård, 2018). Since people cannot physically be at more than one place at the same time, they have limited possibilities for undertaking several projects simultaneously. Projects therefore compete with each other and many projects are never completed (Hägerstrand, 1985).

Different resources and constraints can affect the realization of projects. In time geography, constraints are divided into authority, capacity and coupling constraints (Hägerstrand, 1970). Authority constraints refer to constraints set up by others, such as laws and regulations which exist on many different levels, ranging from the parents’ authority over their children to governmental decisions. Authority constraints can also be socio-cultural power structures affecting inclusion/exclusion and societal norms, such as parents’ time allocation to work and childcare (Ellegård, 2018). The second category, capacity constraints, relate to the individual’s biological (physical and mental) constraints, which can limit a person’s possibilities to perform certain activities (Hägerstrand, 1970). All individuals have capacity constraints, but having an impairment can add new dimensions to them (Löfgren, 2006).

The third category of constraints, coupling constraints, can emerge in situations including more than one person, when activities need to be co-organized in time and space. Couplings exist, not least, among family members in a household (Ellegård, 2018). Picking up children at (pre)school can constitute a coupling constraint, which is fixed in time and space and thereby limits the opportunities to undertake other activities close in time to the pickup, or activities located outside the (pre)school’s geographical proximity (Kwan, 1999). In addition to couplings between human individuals, people can also be coupled with physical things, such as transport modes. The lack of a car or bus needed for mobility can then become a coupling constraint. The time-space location of people and things is therefore essential if a coupling is to be successful and enable certain activities (Ellegård, 2018).

Families’ everyday lives and caring practices

‘Family’ is not simply static, but rather something that is done in time and space (Morgan, 2011; Valentine, 2008), for instance through caring (Faircloth & Murray, 2015) and mobility practices (Morgan, 2011). The time-spaces of family practices can be elucidated through the use of time geography and there has been an increase in time-geographical research acknowledging family life (Ellegård, 2018). By using time geography, it can become clear how families plan their days in relation to fixed activities (Tillberg Mattson, 2002) and when family members are coupled together in everyday life to perform certain tasks or projects, such as mobility, childcare or work (Ellegård, 2018).

Coupling constraints might increase if having a child with disabilities. Research shows that care responsibilities then can exceed those of caring for non-disabled children (Brandon, 2007). Caring practices can occur in different spaces, both inside and outside the home, to which carers can be geographically confined (Bowlby, 2012). Some caring practices include mobility, for instance when accompanying the disabled child to doctor’s appointments (Jang & Appelbaum, 2010) or chauffeuring children to their various activities (Pyer & Tucker, 2017). In addition to space, the time dimension of care is also important to consider (Bowlby, 2012). Parents of disabled children often spend more time on daily caring practices across a longer period of time, when compared with parents of non-disabled children (Crowe & Florez, 2006). Time spent on caring can make it difficult to manage other activities, such as work, due to time-space restrictions (Landby, 2023). Some choose to adjust their work situation by reducing workhours, increase the flexibility through a new employment or quitting paid employment, while others adjust the geographical distance to work to save time (Arksey, 2002). Levels of adaptations and time-space confinement are important for the experiences of caring practices (Bowlby, 2012).

Caring practices are affected by socio-cultural norms, as well as the availability of formal and informal care systems (Bowlby, 2012). These can be important to how disability is experienced in a family context, but also expectations on family members (Wiles, 2003; Wilton & Horton, 2020). In addition to informal care provided by family members, Sweden has a welfare system that includes rather high levels of formal support, compared to many other socio-geographical contexts. In Sweden, disabled individuals can be eligible for personal assistance and similar support, aiming to promote equity in society and make it possible for disabled people to have a work life, social life and leisure activities similar to non-disabled people (Von Granitz et al., 2017). For families with disabled children, this support increases the possibility for children to grow up with their families and for the parents to remain in paid employment (Miettinen et al., 2013). Personal assistance is state funded in Sweden, which increases the opportunities to use such support compared to socio-geographical contexts where external support is expensive (Paccaud & Marcellini, 2022; Scott, 2010). However, families with disabled children do not automatically receive such support but must apply for it and stricter regulations during the past years have led to fewer families being eligible for assistance (Von Granitz et al., 2017).

The Swedish welfare system also includes support in relation to mobility. Disabled individuals can be eligible for special transport service (STS), which aims to improve mobility opportunities for those who cannot drive by themselves and find public transport too inaccessible (Pettersson, 2015). STS opens up opportunities for wheelchair-using children to travel independently in wheelchair-adapted taxis, sometimes together with personal assistants, instead of having parents chauffeur them (Falkmer & Gregersen, 2001). Having Sweden as a point of departure can thus contribute to information about how family members are coupled to each other in a welfare state, with a general reliance on external support rather than support from family members only.

Daily mobilities when challenged by disabling barriers

Mobility across time and space is an important part of everyday life, as it provides opportunities for geographical reach and project completion. However, not all have the same possibilities for mobility (Sheller, 2021). Whereas all individuals have various constraints that affect their mobility patterns (Hägerstrand, 1970), some are more constrained than others, for instance depending on belongings to social categories. Previous research focusing on mobility for disabled people has shown that public transport is too often inaccessible for wheelchair-users (Bromley et al., 2007; Gaete-Reyes, 2015). It is often the physical inaccessibility of public transport that constitutes disabling barriers (Bromley et al., 2007; Velho et al., 2016), but social factors such as discrimination are also important exclusionary practices (Gaete-Reyes, 2015). Inaccessible public transport can mean that disabled people are reliant on car travel for their daily mobilities (Velho et al., 2016).

Most research acknowledging mobility for disabled people focuses on adults with disabilities. As noticed in a literature review by Ross and Buliung (2018), research on disabled children’s mobilities is still scarce. However, from the research that does exist, it seems like many disabling constraints with public transport that are affecting adult wheelchair-users are similar to children and teenager wheelchair-users. Pyer and Tucker (2017) showed that wheelchair-using children and teenagers found it difficult to travel on the same terms as their non-disabled peers, as a reliance on parents to drive them made them less flexible than if they would have been able to use public transportation.

Research has also focused on caregivers’ mobilities. If caring for a disabled family member, the caregiver’s own mobility can be restricted due to time spent on caring practices (Bowlby, 2012), and when travelling with the disabled person, a non-disabled caregiver can encounter the same disabling barriers that the disabled person faces (Giesbrecht et al., 2016; Landby, 2023; Wiles, 2003). In a family context, parents of disabled children can sometimes negotiate disabling barriers by leaving the disabled child at home when undertaking mobility practices not directly involving the child. This can open up more mobility alternatives for the parents but limits the mobility of the child further. Meanwhile, such negotiations are also dependent on having another person who can take care of the child, such as another parent or a personal assistant (Landby, 2019).

Method

This paper is based on time-use diaries and interviews with Swedish parents of wheelchair-using children diagnosed with cerebral palsy (CP). Time-use diaries are useful to capture the complexity of everyday life (Gibson et al., 2013). I chose to have two diary days to exemplify everyday life, while not putting too much burden on the participants. The diaries were then complemented with interviews (Gibson et al., 2013; Snowden, 2015). This combination makes it possible to get an understanding of the participants’ satisfaction with their time-use. Time allocation to activities and projects in everyday life is not necessarily based on personal preferences, but could also be a result of culture, social pressure or other factors that the time-use diary alone do not easily capture (Nichols, 2018). Before the study was conducted, it was approved by the Swedish Ethical Board (Nr: 2019–04728).

I recognize that my position as a female researcher with no disabled children could affect the study in different ways, for instance which parents were likely to participate and how the results are interpreted. My understanding of disability comes mainly from working as an assistant to families with wheelchair-using children, which has given me insights regarding how everyday mobility can be challenging. This experience has been useful throughout the research process, but I have approached this topic through the role as an outsider, highlighting that it is the parents who are experts on their own experiences and that I want to learn from them, which was also a strategy to balance power relations that can emerge between researchers and study participants. Moreover, research regarding disability can be sensitive. In line with the relational perspective on disability, I have approached the topic by focusing on how the surrounding environment can be disabling for mobility practices when having a child whose functionality differs from ableist norms.

Data collection and sample

Parents were recruited in three ways. First, I asked participants of a previous study that I conducted with colleagues (see Nyman et al., 2018), whose children had not exceeded the age of 18 if they wanted to participate in another study. Second, some participants spread information about the study through their social networks. Third, I published information about the study in Facebook groups where potential participants were likely to be members (Brickman Bhutta, 2012). In total, 8 families participated. The aim was not to have a large, random sample, but to have a few participants who could, in depth and detail, exemplify the complexities of mobility when having a disabled child. Therefore, I made no further attempts to increase the sample size.

The participants were asked to note the following in their diaries: what time an activity started and ended; what the activity was; with whom; where; and if they have any comments about it. I did the follow-up interviews soon after the diary days. The interviews provided the opportunity to talk about the diary days, but also discuss how those days were similar or differed to other typical weekdays, which was considered beneficial due to the few diary days.

In some cases, both parents participated in a joint interview, while in other cases both filled in diaries but only one parent was interviewed, due to the participants’ schedules and difficulties finding time when both parents could be present. The interviews did not follow a regular interview guide, instead the individual diaries were used to probe questions. I asked the participants to go through their diaries and questions were asked continuously. However, some themes were covered in all interviews, including daily mobility (transport modes, experiences, opportunities and constraints), parents’ and children’s activities (work, school and leisure) and societal support (what support they had and how they experienced it). The interviews were audio-recorded with permission from the participants.

The participants are Swedish parents, living in different places in Sweden, but mainly in urban and sub-urban areas (see Table 1). One participant is a single mother, while the others are couples. The age of the wheelchair-using children ranges from 4 to 15 and all of them have siblings. All families have two children, except one that has four children. Only children living in the household are included, as older siblings with other residences are typically not involved in the logistics of everyday mobility. Three of the mothers work full-time, while the others work part-time, are on parental leave or are currently stay-at-home mums (and receive an income for taking care of their disabled children). Five of the fathers work full-time, while two work part-time. The families’ incomes were not explicitly asked for, but all families can be considered within the middle-class span. The societal support also varies among the families, ranging from no assistance at all to full-time personal assistance and STS. All disabled children live in their family homes, but one family has support in terms of short stay living, meaning that the daughter spends one afternoon and night every two weeks at an adapted place with trained personnel. For confidentiality, fictive names for the participants are used throughout the paper.

Table 1. Characteristics of the participants.

Participants	Age of child	Number of siblings	Living area	Work situation	Societal support
Nina and Tim	15	1	Sub-urban	Stay-at-home mum, full-time	STS
Maria and Peter	11	1	Sub-urban	Part-time, part-time	Personal assistance, STS
Hanna and Lars	8	1	Urban	Full-time, full-time	School assistant
Malin and Patrik	11	1	Urban	Full-time, full-time	Personal assistance, STS
Karin and John	4	3	Sub-urban	Stay-at-home mum, full-time	None
Johanna and Viktor	6	1	Urban	Full-time, full-time	Short stay living 1/14 days
Linda	9	1	Urban	Part-time	Personal assistance, STS
Kristin and Erik	8	1	Rural	Parental leave, part-time/parental leave	School assistant

Data analysis

The time-use diaries had been handwritten by the participants and I transcribed them. From the diaries, I constructed time-geographical diagrams to visualize the data (Ellegård, 2018). Examples of these diagrams can be found in the results section. Different individuals’ trajectories are illustrated in different colours and the diagrams can show when there are couplings with family members and with personal assistants. Distances between points in the diagrams do not respond to real world distances (the participants were not asked for this, due to confidentiality regarding place of residence, etc.), but the mobility activity’s movement on the time axis can indicate how far away the activities are in time-space, given the chosen, available transport mode. As the parents’ diaries only included their own activities and movements, the other family members’ movements were asked for during the interviews and added into the time-space diagrams.

I transcribed and analysed the interviews using thematic analysis. This analysis method is based on sorting words and sentences into different codes, which then are divided into themes (Braun & Clarke, 2006). For the analysis I had coupling constraints within the family as a pre-determined theme. I also allowed for new themes to emerge throughout the coding process. Two important themes that emerged were couplings with individuals outside the family and couplings with things, such as the wheelchair and a car. Throughout the analysis, I used the relational perspective on disability and focused on how ableist norms and disabling barriers affected the different couplings that families experienced when travelling with their wheelchair-using children.

Results

The results section is divided into four sub-sections, starting with coupling constraints within the family, and followed by sub-sections about couplings with other people that affect the families’ everyday lives (e.g. authorities and support, such as assistants). The last sub-section presents coupling constraints with things.

Couplings with family members

Living with a disability can be challenging if social and physical environments are not sufficiently accessible and adapted, implying that disabled children can need support (often by parents) to overcome some barriers. The findings show that families adapt to disabling barriers in different ways. One example is the family of Johanna, Viktor and their two children, living in a large city in Sweden. They had two preschool options accessible enough for their disabled girl (i.e. coupling constraints with the preschool, based on a political location decision that is an authority constraint) and the girl was luckily admitted to the closer option, but it still affected the family’s geographies in various ways. To make everyday life as easy as possible, they changed their place of residence and the little brother’s preschool location:

Based on the preschool’s location … we moved in that direction to be close, which also gives us the opportunity to travel by public transport, take the bike or even walk, or take the car. As we want to have it./ … /We have her little brother at a preschool close to hers, so that we can have drop-offs like any other family, so he doesn’t go close to our home like other kids but adapted to [disabled girl’s] preschool/ … /about four kilometres from our home.

(Johanna, mother of 6-year-old girl)

In line with previous research (e.g. Arksey, 2002), the parents’ work situation can also be affected by coupling constraints. Some parents choose to decrease workhours or temporarily quit working. One of the mothers, Nina, has been staying at home with their child and is now applying for jobs, but finds working full time difficult if her husband does not decrease his workhours:

That we both should work full-time … that wouldn’t work since she gets home with the taxi somewhere between two and four and someone has to be at home when she gets home.

(Nina, mother of 15-year-old girl)

In one family, the parents chose to start their own company in order to become more flexible. Before, Hanna and Lars were working as full-time employees at a hospital and often felt bad about leaving their colleagues with a lot to do when they had to leave due to family coupling constraints:

It’s always the thing that you might have to leave a bit earlier than you should according to your contract. You’re always a bit behind on the flexitime and you might have to leave when there’s suddenly a lot to do and there’s always someone else who has to stay.

(Lars, father of 8-year-old boy)

By starting their own company, the parents could decrease coupling constraints at work to adapt to increased coupling constraints at home. In addition to the increased flexibility in time when having their own company, their choice of the new work location, in the same building as their apartment, also provides more flexibility. An example of their daily path, based on the time-use diaries, is provided in Figure 1. The vertical axis shows time, ranging from 5:00 AM to 11:00 PM, while the horizontal axis shows places visited during the day. The coloured lines show the various family members’ paths, and when the lines are drawn next to each other the individuals are at the same location or travelling together.

Figure 1. Daily path of Hanna, Lars and their 8-year-old disabled son.

The diagram in Figure 1 shows how they all are at home in the morning, Lars leaves for work early in the morning while Hanna and their disabled child remain at home for a couple more hours and then travel to school. Due to the inaccessibility of the closest school options for non-disabled children, the child goes to a school located further away. Drop-offs might therefore take an hour. Figure 1 shows that the child stays at school and Hanna drives to work. Since the mother and father in this case work at the same workplace, their lines are connected at the same location. The parents are then coupled, but this coupling is not necessarily a coupling constraint as they are not dependent on each other to perform all the work tasks. Lars leaves work to pick up the child at school while Hanna continues working for a few more hours. They are all at home in the evening. The diagram thus shows that the parents are dividing childcare responsibilities by providing mobility for their child during different parts of the day, meaning that only one parent is coupled to the child in a mobility situation during the morning and the other in the afternoon, while the other parent is working.

Yet another example of how to solve coupling constraints within the family is the family of Kristin, Erik and their two children, whereof the older one is the wheelchair-user. His little sister is two years old, and the parents are dividing parental leave so that Kristin is on parental leave during the first half of the day and Erik in the afternoon. Erik is working half-time and commuting but is at home around 2:00 PM when the disabled son’s school day has ended.

Figure 2 shows that Kristin is taking the disabled child to school in the morning and back home in the afternoon. Erik is busy in his work project (i.e. commuting or working) and the two-year-old sister is neither with the mother or the father. Instead, the children’s grandfather is taking care of her while Kristin is chauffeuring the disabled child. This is possible as Kristin’s parents are living next door, which was a choice based on the grandparents’ willingness to be close and support with childcare. This example also shows how one parent can have quite far-reaching mobility, while the other parent’s mobility is highly coupled to the children.

Figure 2. Daily path of Kristin, Erik, their 8-year-old disabled son and 2-year-old non-disabled daughter.

In addition to work adaptations, many parents’ leisure time is affected by accompanying the children to their activities. The parents report that the adapted leisure activities for the wheelchair-using child are usually located further away compared to siblings’ activities (due to the centralization of accessible activities) and can imply more need for parental support, which limits parents’ freedom to perform their own activities and support the siblings with their activities. This centralization and the long trips made many families reject leisure activities.

Couplings with authorities

Coupling constraints do not exist between family members only; the children are also coupled with doctors, physiotherapists, etc. Many parents report at least one such appointment every week, while some have several if including rehabilitation training. These appointments often occur during typical workhours and usually require that a parent accompanies the child, which make it difficult for parents to manage full-time employment, especially if the workplace has inflexible workhours. Karin, whose child is four years old, is staying at home with him until he reaches school-age, instead of having him at pre-school, partly because there are no accessible preschool options close by, but also because she found it unfair to her co-workers that she would have to be absent from work so often:

There are still so many doctor’s appointments and stuff like that, so if I was going to work in [larger city] where I usually work and be able to manage work and be away like … two to three days a week with him./ … /I cannot choose that I only want to have appointments on Mondays, it doesn’t work like that. It doesn’t, so I never know from week to week when I have to be away.

(Karin, mother of 4-year-old boy)

When planning her return to the labour market, Karin is considering part-time employment and changing her workplace to work closer to home and her son’s future school, instead of going back to her old job. Another mother, Linda, explains that there are many appointments which they cannot reschedule, as there are specialist doctors coming from other cities, which her son needs to see when they are in place. Then she has to make herself available, otherwise they risk having to wait for half a year for the next opportunity. However, other appointments, such as those occurring on a weekly basis are easier to change, which is necessary as her work is in the service sector and requires her to be at her workplace. Many appointments take place in the neighbouring municipality:

If we have an appointment in the middle of the day, I have to leave work an hour beforehand, because I have to go to his school, get back here from the city centre, take him to [place for appointment], and then on the return leaving him as well, so I try to avoid these middle-of-the-day-appointments. Or I try to avoid between ten and one … those take away the whole workday. I rather take appointments at eight or after one./ … /Sometimes I told physiotherapists that ‘it’s really important that I am at work today, is it OK if the assistant comes and we communicate through phone?’

(Linda, mother of 9-year-old boy)

For parents with more flexible workhours, such appointments can be more easily planned without the parents having to take time off from work. Some parents (with occupations that allow it) choose to work from home during days when they have appointments, to save time by not commuting.

Couplings with support

The wheelchair-using children do not necessarily have to be coupled with family members to overcome disabling barriers. In this study, grandparents were mentioned as important to support the disabled children (or siblings, as seen in the example with Kristin and Erik above). However, even more important to day-to-day life was having some kind of external societal support, often in the form of personal assistance and/or STS. In line with previous research (e.g. Landby, 2019), parents with such support experienced fewer coupling constraints in everyday life and found work life easier to manage, compared to those who lacked this kind of assistance.

An example of a family eligible for external support is Malin and Patrik who have two children whereof the wheelchair-using child travels by STS to school, has a school assistant and a personal assistant in the afternoon. Due to this support, the parents are able to commute to another city, something that was not possible to do before they got this support. When a child is coupled to a personal assistant, the coupling constraints within the family decrease, allowing more time-geographical freedom for the parents, for instance regarding workhours and work location. When talking about their work situation, Patrik explained that it ‘would have been impossible if we didn’t have assistance. That is like the keystone to us being free on the labour market’. A common day in the life of Patrik and his family is presented in Figure 3, where the parents leave for work in the morning and the STS comes to pick up the disabled child for school, where his school assistant meets up with him. In the evening, the disabled child is accompanied by a personal assistant when going to a leisure activity, and his friend’s parent is chauffeuring them there. Figure 3 shows that the family members can have rather individual paths and there are not many coupling constraints between them in mobility situations. An exception is that the parents are travelling together to work, but that was a choice based on convenience rather than a coupling constraint due to a lack of alternatives.

Figure 3. Daily paths of Malin, Patrik, their 11-year old disabled son and 9-year-old daughter.

While many coupling constraints can decrease when the family has access to assistance, new coupling constraints emerge as the child (and the other members of the family) instead is coupled with other persons. This can be problematic, for instance when the assistant who was going to accompany the child is getting sick and there is a lack of substitutes. Parents who have been counting on assistance and thereby being able to go to work might therefore be forced to reschedule on short notice, to accompany the child to school or during leisure time, sometimes for a longer period of time if having a gap between employed assistants:

Every now and then we have to take leave of absence from work and go with her to school and that is about the worst. It is OK when it’s during evenings, but sometimes we need to step in during school hours and that is so tiresomely, but we do that sometimes.

(Maria, mother of 11-year-old girl)

In addition to difficulties leaving work to be with the disabled child during the daytime, parents also report feeling guilty about not being able to be a present parent for the non-disabled sibling(s). Personal assistance is thus explained as important, not only for the disabled child, but for the whole family. When decreasing coupling constraints between parents and the disabled child, the parents not only have more flexibility on the labour market, but also more time for the other children in the family.

Couplings with things

In addition to couplings between people, individuals can also be coupled to things. The clearest example in this study is that the disabled children in this study are coupled to their wheelchairs. While the wheelchairs could enable personal mobility, it could be challenging to use a wheelchair in environments where walking individuals are the norm. Many parents said public transport was too inaccessible or too unreliable. Regarding local bus transport, most buses (but not all) in Sweden are adapted for wheelchairs, but often occupied by baby strollers or other passengers, meaning that they could not know when they would be able to get on and that made planning very difficult. Therefore, the children and their parents are highly coupled with a car for their daily mobility. In addition to the car being the most feasible option when travelling with a wheelchair, the disability related appointments with physiotherapists, etc., require a high mobility flexibility, which the public transport system does not sufficiently provide.

If he had been a walking child without difficulties, then we could have … like ‘let’s go, we’ll take the bus and leave the car. The car is broken, it doesn’t matter, we’ll take the bus’. If the car breaks now, oh my god … you panic./ … /It doesn’t work without the car. I mean, I cannot go anywhere. It would be a total chaos.

(Linda, mother of 9-year-old boy)

We used the car during his whole childhood, until he could go by taxi, which we wouldn’t have done otherwise. Then we would have taken the bike. And then we wouldn’t have two cars either, if he didn’t have his disability. I’m pretty sure.

(Patrik, father of 11-year-old boy)

The parents quoted above live in cities with public transport available. Johanna’s family also lives in a city with many public transport options available but are using the car for many trips with their wheelchair-using girl. However, even if they take the car to preschool, the parents go from preschool to work using public transport:

We have one car so one parent leaves the children and parks close to a stopping-place, from where I can go to the train and [husband] to the bus. And then, on the way back the next parent picks up the children. Takes the car and go get the children and drive home./ … /If we would have had two ordinary kids, we wouldn’t have taken the car and we would have gone by bike to work.

(Johanna, mother of 6-year-old girl)

The car dependency among the families could decrease if the children are eligible for STS, such as an adapted school taxi. The STS is commonly used in combination with personal assistance, as many parents expressed an unwillingness to let the children travel by themselves, without any other support than the taxi driver. The STS taxis are adapted with a ramp so that the children can get onboard in their wheelchairs and stay in the wheelchair during the ride. Some of the families have adapted their own cars with such features, but many have a lower degree of adaptation, such as adapted seats. In addition to the wheelchairs, many of the children use other aids in everyday life. Some bring these aids back and forth to (pre)school every day, increasing the need to be coupled with cars or STS as the aids are difficult to bring along on public transport or when using various forms of active travel.

Concluding discussion

This paper aimed to elucidate the daily mobilities of Swedish families with wheelchair-using children with cerebral palsy (CP), focusing especially on how the family members’ mobilities are affected by coupling constraints. The findings show that the families’ mobilities are highly affected by how society is planned and what kind of support is available to them and that disabling barriers based on ableist norms need to be considered from a family perspective. This paper also shows that time geography can add a new dimension to the relational perspective on disability. While the time-geographical concepts of capacity and authority constraints can be rather easily found in the relational perspective on disability, the use of coupling constraints effectively shows that non-disabled family members can experience disabling barriers and have mobility restrictions similar to their disabled children.

Moreover, time geography contributes to an understanding of the importance of time and space for the experience of disabling barriers. The time-space diagrams show some of the complexity in everyday life and how the level of coupling constraints within a family can be affected by a surrounding environment based on ableist norms. For instance, spatial (pre)school segregation of children based on disability exemplifies how medical perspectives on disability still exist in societal planning in Sweden and the study results show that this segregation can have large effects on the families’ daily lives and mobilities. Travel distances to adapted (pre)schools can be rather long, due to centralizations, and time spent on school travel impinges both on the children’s leisure time and on parents’ possibilities to undertake other activities, including work, if they are coupled to the children in these mobility situations. The whole family’s time-geographical options can thus be more limited than for children who have closer (pre)school options, hence showing the importance of spatial planning of societies.

Examples from the study show how families adapt to long travel distances to (pre)schools, for instance by moving closer to an adapted preschool and change the sibling’s preschool location to be closer to the disabled child. Others choose to geographically adapt other aspects of life to be closer to home, for instance work in the same building as they are living och having supportive grandparents as neighbours. This indicates that long trips to (pre)school could increase the need to have other activities in the families’ close geographical proximity. More inclusive education systems where all children can attend all schools could be valuable from a mobility perspective and decrease travel distances and the time spent on couplings between parents and children. This also indicates that a shift from a medical perspective to a relational perspective on disability among policy makers and planners could benefit all family members and improve their time-space opportunities.

In line with previous research (e.g. Bowlby, 2012; Wilton & Horton, 2020), the findings also show that the socio-geographical context can be important in shaping these families’ daily lives and mobilities, for instance in terms of what kind of support is available. Some support systems, like healthcare, can increase couplings within the family, since parents need to accompany the children to different healthcare appointments which usually occur during typical workhours. These appointments can make it challenging for the parents to remain in full-time employment, especially if working at workplaces with a lack of flexibility and possibilities for adaptations for parents with children who differ from ableist norms.

However, other support systems, like personal assistance and STS can decrease couplings within the family. When a child is eligible for personal assistance, the parents can be more flexible, for instance commuting to work or staying at their workplace while the assistants could follow the child to appointments during the workday. Such solutions can be especially important for parents with occupations where they cannot have flexible workhours or work from home as well as for those who are commuting, showing that these support systems should be designed with a family perspective in mind.

The importance of support systems for the experience of living with a disability and caring for a disabled child, not least in terms of how the families’ time-spaces are affected, also exemplifies how disability is context dependent: parents of children sharing the same diagnosis and physical challenges can have very different experiences depending on where they live, how society is planned and what kind of support that is available. This makes the findings differ somewhat from studies conducted in socio-geographical contexts where informal care is more common and caregivers mobilities are even more connected to those of the ones they care for (Bowlby, 2012; Paccaud & Marcellini, 2022; Scott, 2010). However, even if formal support systems can open up many opportunities for the families and the findings show that these families benefit from being eligible assistance, the results also suggest that these families’ everyday lives and daily geographies are sensitive to changes that, at least partly, are outside their own control. A high reliance on formal support like personal assistance and STS also implies high vulnerability and the family members could need to adapt their time-spaces on short notice, showing how expectations on family members can shift and experiences of caring practices can be affected by changes in the families’ social environments (see also Wiles, 2003; Wilton & Horton, 2020). The families could also be vulnerable if couplings with things such as the family car were implicated, for instance if the car was broken, meaning that accessible and available mobility alternatives adapted for various functional diversities are necessary even if some families still would prefer to use their family car when possible.

Since this is a small study with a few participants, there is a need for larger studies within the subject. A suggestion is also to conduct a longitudinal study, which follows families over time and explores how the families’ mobilities evolve, for instance as the children grow older and life situations change. This would give further insights to the meaning of the time dimension in how caring for a disabled child and the following coupling constraints within the family are experienced (Bowlby, 2012). Future studies could also compare the mobilities of families with disabled children living in other countries with the Swedish welfare state example. This could provide other results, given the importance of context specific social and physical environments in the experience of disability and disabling barriers.

Moreover, time-use diaries could be valuable to use in other areas of geography research as well, not least given the illustrative diagrams that can be produced based on the diaries, in which coupling constraints between various individuals (and things) can be visible. Examples of future usage of this method include studies on children’s independent mobilities, but also mobilities of individuals in other stages of life, and those living with different disabilities. Such studies could shed light on how spatial planning and social support could be better designed to increase mobility opportunities for different individuals. By elucidating coupling constraints, it can become clear when support like a personal assistant is needed, but it can also initiate other changes, for instance to plan society in more inclusive ways so that individuals who are now coupled to others in certain situations can have more independent geographies, developing their own relations to space and place (Witten et al., 2019).

Declaration of conflicting interests

The author declares no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This work was supported by the Swedish Transport Administration (Grant number: DNR TRV 2017/19063) and the Umeå University programme ‘Mobility, Transformation and Regional Growth’ (Grant number: UMU-300-2054-12).