Introduction
Within the vast and growing body of interdisciplinary scholarship on care, there has been relatively little focus on disabled people’s1 reciprocal caregiving practices, albeit with a few notable exceptions (Runswick-Cole et al. 2024; Ward 2011; 2015). This is perhaps not surprising given the political and discursive separation that has developed between care and disability in the context of the disability rights movement’s calls for self-determination and autonomy (Fine and Glendenning 2005; Hughes et al. 2005; Kröger 2009; McLaughlin 2020). From a disability studies perspective, care has historically been framed as something that has been done to disabled people; its association with paternalism, dependency and abuse of power has led many disabled people to reject the term in order to (re)prioritise discourses of rights and independence. However, we concur with McLaughlin (2020, 398) and others in suggesting that ‘something has been lost’ in the turn away from care. In particular, we suggest that feminist care ethics’ framing of a relational conception of humans as interdependent care givers and receivers (Tronto 2013) offers the potential to explore the complex relationalities that constitute care practices, and to challenge binary care giver/care receiver categorisations that have often positioned disabled people as passive care receivers in the imaginary of welfare systems (Kröger 2009).
Building on literature which seeks to build a ‘discourses bridge’ (Hughes et al. 2005, 271; see also Runswick-Cole et al. 2024) between feminist care ethics and critical disability studies and studies which illuminate how groups who are often constructed as care receivers also engage in caregiving (Bowlby et al. 2022; Kullman 2014; Power and Williams 2020), this paper explores how disabled people in Ireland are situated in complex networks of care relations and practices that take place at a range of spatial scales, from the family to the neighbourhood, community and indeed planet. Drawing on findings from qualitative research with disabled people in Ireland, we interrogate the multiple practices of caregiving engaged in by participants, which ranged from providing practical, emotional and financial support for family, friends and neighbours, through to political activism as a form of care. Challenging assumptions about formal (paid) care relationships as uni-directional (flowing from carer to cared-for), we also explore the reciprocal dimension of participants’ ‘formal’ care relationships and the ways in which disabled people leveraged their personal assistance services (PAS) to be more practically involved in (informal) familial care. In so doing, we demonstrate how disabled people’s caregiving practices illuminate the relationality of caring, recast the boundaries between formal and informal care as porous and shifting, and contest ‘differences between ‘us’ and ‘them’, that is, between caregivers and ‘the dependent’’ (Kröger 2009, 416). We draw on these findings to call for recognition of disabled people’s dual position as citizen-carer and ‘cared-for-citizen’ (Lynch 2022, 125).
Care Ethics, Relationality and Disrupting the Care Giver/Receiver Dyad
Our understanding of care in this paper is drawn from a significant body of inter and cross-disciplinary literature underpinned by the feminist ethics of care. In an oft-cited definition, Fisher and Tronto (1990, 40) describe care as
a species activity that includes everything that we do to maintain, continue, and repair our world so that we can live in it as well as possible. That world includes our bodies, our selves, and our environment, all of which we seek to interweave in a complex, life-sustaining web.
A key revelation of this definition is the acknowledgement of the universality of care and the relationality that sits at the centre of human experience. This universality and relationality recognises that all humans are interdependent, and we cannot function or indeed flourish without the care provided by others around us. It acknowledges that we all require care at different times in our lives and that identities of care giver and care receiver are not mutually exclusive, nor do they sit in binary opposition to one another. Rather, it is possible to be both care giver and receiver at the same time, and at different points across the life course.
A key insight of care ethics thinking, evident in Fisher and Tronto’s (1990) definition above, is that this relationality need not be limited to interpersonal, one-to-one human relationships, but also exists within wider sets of social, economic and political relations, and with human and non-human actors. Reflecting Kittay’s (2019, 116) notion of ‘nested dependencies’, our care networks are not just those closest in (intimate personal or emotional care relations that happen within the family, for example), but also reflect our positioning in local communities, neighbourhoods, cities and nations, and within welfare state infrastructures (Kullman 2014; Power and Williams 2020; Raghuram 2016). Viewing care as a practise and value (Held 2006), studies underpinned by feminist care ethics draw attention to diverse practices that can constitute care – from undertaking personal bodily care, to financial and emotional support, to care for the non-human world (see, for example, Puig de la Bellacasa 2017), and care as political activism – that take place across multiple spatial scales. While we may think about care in terms of specific spaces where formal care is enacted (residential institutions or nursing homes, for example), spaces of care can be understood as far more distributed and fluid, created through individuals’ ever-changing informal care relationships. This is captured by Bowlby et al.’s (2010) notion of ‘caringscapes’, which ‘emphasises the social patterning of caring exchanges across multiple temporalities and spatialities’ (Bowlby et al. 2022, 1178; see also Bowlby and McKie 2019).
Care ethics also sensitises us to the fact that ‘whose care needs are recognised (and the nature of those needs), who is expected to provide particular forms of care, and how, are socially determined and variable’ (Bowlby et al. 2022, 1177). Welfare states frequently reinforce ideas about who is deserving of care or otherwise; these discourses became very readily apparent during the COVID-19 pandemic, in which disabled people were viewed as at once vulnerable and in need of protection, but also expendable as an ‘at risk’ population (Abrams and Abbott 2020; Abrams and Orsini 2022; Goodley et al. 2023; Loughnane and Edwards 2024). The construction of care as a feminised social practise also persists, reflected not just in the gendered scripts which see women shoulder the burden of informal care, but also in a care workforce increasingly made up of low paid migrant women (Raghuram 2019).
Drawing on these analytical starting points, a number of studies have sought to challenge and broaden analyses about who provides and receives care and disrupt the giver/receiver dyad (Bowlby 2011; Bowlby et al. 2022; Kullman 2014; Thompson 2022). Thompson’s (2022) study of women living in non-profit housing in Canada, for example, points to the multiplicity of relationships – between tenants themselves and between tenants and staff – which contribute to their understandings and experiences of care. In this context, tenants are not passive care recipients but are ‘actively involved in creating feelings of community within their housing, through the provision of practical and emotional support to their neighbours’ (Thompson 2022, 1136). Similarly, in his exploration of children’s urban care practices, Kullman (2014) also challenges ideas about children’s passivity as care receivers, by focussing on their multiple engagements with both the human and non-human realm – pavements, zebra crossings, and animals – as they enact care for the environment.
Reappraising Disabled People’s (Invisible) Caregiving
Extending the parameters and diversity of care practices is particularly relevant in the context of disability and disabled people’s lives (Clifford Simplican 2018; Runswick-Cole et al. 2024). There are relatively few studies which specifically explore disabled people’s caregiving practices. A small body of literature has focussed on the experiences of adults with intellectual disabilities (ID) caring for older parents and family members (Perkins and Haley 2013; Truesdale et al. 2021; Williams and Robinson 2001); this literature illuminates how, as family caregivers age, people with ID engage in reciprocal care, ‘with their formerly dependent role evolving into a caregiving one’ (Truesdale et al. 2021, 240) – and yet these roles are often rendered invisible to statutory services (Truesdale et al. 2021; Williams and Robinson 2001). Ward’s (2011, 2015) research also utilises care ethics to disrupt ideas about people with ID as passive care receivers, by focussing on their relational caregiving practices. She demonstrates how people with IDs’ ‘role as mutual carers has the power to relocate them as capable individuals engaged in relational autonomy’ (Ward 2011, 174; see also Clifford Simplican 2018; Fudge-Schormans 2015). Significantly, she argues that caregiving can contribute to disabled people’s wider sense of societal belonging and participation, by recognising their valued social roles and viewing care as a (collective) citizenship practise (Ward 2011, 2015; see also Lynch 2022; Sevenhuijsen 2003).
Despite these interventions, there remains a paucity of literature on the diversity of disabled people’s caregiving practices. This arguably reflects the dominance of societal constructions of disabled people as care receivers (Ward 2011) and some of the tensions that exist between disability rights agendas and feminist care ethics (Hughes et al. 2005; Kelly 2011, 2013, 2014; McLaughlin 2020; Runswick-Cole et al. 2024). While some authors have drawn attention to care’s radical potential in challenging the inequalities disabled people face (see for example, Clifford Simplican 2018) and forging new forms of disability activism (Piepzna-Samarasinha 2018), care remains a fraught term for many disabled people, who understand it as central to experiences of oppression (Kelly 2011, 2013; Watson et al. 2004). In seeking to assert disabled people’s rights, autonomy of the self has become a key precept of the independent living movement (ILM), and the development in many European welfare states of more personalised service models which put the disabled person in control of their own support (Power et al. 2022). However, it has been argued that there are limits to this understanding of self – not just because it does not reflect the intricate web of interdependencies which shape disabled people’s lives, but also because the personalisation agenda has been captured by an ‘individual liberal consumerist logic’ (McLaughlin 2020, 399) which places responsibility for independence back on to the individual in the absence of collective state supports (Power et al. 2022; Ward 2011). It is for this reason that commentators drawing from care ethics have proposed the notion of ‘relational autonomy’ or the ‘relational self’ as a way of acknowledging the interrelationships and networks that enable, and are a precursor to, disabled people’s independence and self-determination (Davy 2019; Power et al. 2022).
We suggest that a focus on disabled people’s reciprocal care practices is a way of extending this relational thinking and challenging dominant perceptions of care relationships in which care is provided to ‘vulnerable’ others. Indeed, we concur with Thompson (2022, 1136) when she states that
this is a conceptualization that must be challenged, not only because vulnerabilities themselves are intersectional and experienced differently, but also because hegemonic understandings of who is a care-receiver, and who within that category are then ‘deserving’ care subjects, are situated within problematic social hierarchies of power.
The lack of visibility of disabled people’s caregiving and reciprocal care relations not only has the potential to deny disabled people’s agency and citizenship, but also fails to recognise the multiple ways in which, as Power et al. (2022) describe it, disabled people build their lives relationally. Drawing on care ethics, therefore, we offer this paper as a way of extending and rethinking understandings of disabled people’s everyday care practices and unsettling the care receiver/giver binary.
Methods
The data in this paper is drawn from a three-year (2020–2023) study entitled CareVisions which sought to explore how we might re-envision care relations and practices in Ireland following the COVID-19 pandemic, informed by ideas from feminist care ethics. The project had multiple strands, including discourse analysis of policy documents to interrogate governmental constructions of care (Daly and Edwards 2022; Loughnane and Edwards 2023; Loughnane, Kelleher and Edwards 2023), and empirical work with two groups embedded in relations of care in Irish society: disabled people and asylum seekers (see for example, Daly and O’Riordan 2024; Loughnane and Edwards 2024). This paper draws specifically on the strand of work with disabled people, which was undertaken with nine members of an independent living collective in Ireland. Ethical approval was received for the study from University College Cork’s Social Research Ethics Committee (SREC).
Recognising the importance of developing a dialogic and relational form of research practise (Brannelly and Barnes 2022), we sought to devise a participatory research approach across the project, including in our work with disabled people (for a more detailed discussion, see O’Riordan et al. 2023). We began by having conversations about possible research approaches with the CareVisions Research Advisory Group, which included representatives of care organisations, feminist and disabled activists, and those working in the area of migrant rights. This was followed by informal conversations with a disabled women’s group and a national independent living organisation to explore potential for a collaborative research approach with its members. The latter organisation expressed a strong interest in working together, and after consulting with its members, identified nine disabled people who had an interest in taking part in the research.
In an initial meeting, we met with the nine participants to devise the structure and methods of the research. We agreed upon a series of sequential group discussions, meeting four times over a nine-month period, to address issues of care concern to the participants. Developed in collaboration with participants, the themes for the group discussions included societal understandings of care; exploring individuals’ care networks; the impacts of COVID-19; and how we might re-imagine ‘good care’. The group discussion process was complemented by individual semi-structured interviews to enable participants to articulate in more depth their individual care narratives and experiences. There was no obligation on individuals to participate in both elements of the process, although most chose to. Not all participants were able to attend every focus group discussion. Participants were informed that they could withdraw at any time from any element of the research process.
The nine participants in the research process had different experiences of ‘care’ or personal assistance and different living arrangements. Some of them lived alone in the community supported by a PAS; one person lived with their parents; and others lived with family members (their husband or wife and children). All the participants had mobility or sensory impairments. Participants were aged from their twenties up to seventies and comprised seven women and two men. Table 1, using pseudonyms, provides an approximation of participants’ ages, living arrangements and care/support services.
Table 1
Overview of research participants.
| Aisling | 40s. Visual impairment. Lives with parents in a town. |
| Alan | 20s. Mobility/sensory impairment. Lives with wife in rural area. Uses PAS. |
| Catherine | 50s. Mobility/sensory impairment. Lives with husband and family in a town. Uses PAS. |
| Gemma | 60s. Mobility/sensory impairment. Lives alone in a city. Uses PAS. |
| Janis | 40s. Mobility/sensory impairment. Lives alone in a city. Uses PAS. |
| Lily | 60s. Mobility/sensory impairment. Lives alone in a city. Adult children. |
| Lisa | 40s. Mobility/sensory impairment. Lives alone in a city. Uses PAS. |
| Mary | 70s. Mobility/sensory impairment. Lives alone in a town. |
| Steven | 50s. Mobility/sensory impairment. Lives with partner and children in rural area. |
Reflecting the pandemic context and at the request of participants, all the focus groups took place online; four of the interviews took place online, and five face-to-face in participants’ homes/local area. All groups and interviews were recorded, transcribed and sent back to participants for checking. Conscious of the need to undertake ‘careful’ research (Brannelly and Barnes, 2022), we kept in touch with individual participants after and between group discussions, particularly when sensitive and sometimes emotive issues had been discussed.
In terms of the analysis process, the two authors began analysing the transcripts utilising a thematic analysis approach to identify key themes and codes (Braun and Clarke, 2006). During this process, we met with the group two more times, the first time to discuss and get their views on what we perceived to be some of the initial themes emerging, and the second time to explore a more complete set of themes and findings. At this second meeting, we also discussed potential actions arising from the findings with group members, which went on to inform the recommendations of the overall project (Edwards et al., 2023). It is notable that while disabled people’s caregiving had not been a key focus of the study’s initial aims, it was something that became very apparent as the group discussions progressed. In particular, participants felt strongly that societal stereotypes of disabled people as passive care recipients should be challenged, not least by making their caregiving visible.
Findings
In this section, we interrogate some of the multiple ways in which disabled people discussed their reciprocal care relations and caregiving practices. It is important to note from the outset that some participants rejected the term ‘care’ completely, given its association with wider disabling structures and relationships that shape disabled people’s lives. Steven, for example, stated ‘For disabled people, care is a loss of independence, a loss of power, being in a systematic structure, usually a private business arrangement where they undervalue you and you cover the costs…So, I just think that using the term care you are already starting from the backfoot’. While acknowledging and agreeing with these arguments, other participants reflected on the complexities of care as a term and its meaning in their day-to-day lives. Disabled people described being engaged in a breadth and depth of caring activities, from one-to-one care for family members, friends and neighbours, care for animals and the planet and forms of individual and collective caring within their disability community through peer support and activism. Demonstrating the blurred boundaries between the giving and receiving of formal and informal care, participants also detailed the emotional labour they undertook to sustain relationships with their personal assistants (PAs) and care workers and described how they leveraged formal support services to be more practically involved in caregiving.
While participants did not see these practices and relations as particularly remarkable, they were only too aware of how they were invisible in the public imaginary of disabled people. Reflecting the societal paternalism expressed by Steven, participants were conscious that disabled people are assumed to be incapable of caregiving, or as Lisa expressed it, ‘disabled people can’t give care in any shape or form’. They articulated how dominant understandings of care erase disabled people’s caregiving and wanted their caregiving practices to be acknowledged, because ‘plenty of disabled people care’ (Lisa). Challenging disabled people’s positioning only as care receivers for example, Alan stated: ‘this idea that care is only for ‘the disabled’, ‘the elderly’. Whereas, no, actually, care is for everyone’. Similarly, and echoing ideas about interdependency in care relations, Janis noted ‘Anybody who knows a disabled person through friendship or family or whatever would absolutely see there’s a reciprocal arrangement’.
Participants described the multiple caregiving identities they adopted in their lives, which had changed and developed over time. Lily for example reflected on her multiple care roles and experiences across the life course – as a woman with an acquired disability, as a mother, an informal carer for her father, and formerly as a paid healthcare assistant – recognising her ‘insight … having been a carer, in various areas of my life, to needing care’. Mary too acknowledged the challenge of changing care giver/receiver identities, moving from a situation where ‘you know, I was doing for everybody in restaurants, running restaurants, cooking, do the whole lot, running the place, to actually then not being able to do anything.’ Speaking to the discomfort with care within disability politics, and echoing feminist ethics of care’s focus on the universality of caring, Alan pointed out that care ‘is not a dirty word either or is not a just for one section of society’ and ‘should be embedded in all aspects of our lives’. Society’s failure to account for the liminality between caregiver and receiver, has created ‘embarrassment, shyness, shame’ around care and obscured how all humans are ‘interconnected’ (Lily). While some participants expressed disquiet about the term care and its negative associations, therefore, they were also very aware of the complexity of care relations that shape disabled people’s lives – reciprocal relations which flow in multiple directions between a number of different actors and spaces.
Disabled people’s reciprocal care practices for family and friends
Our participants held a range of caring roles within their families as mothers, fathers, sisters, brothers, daughters and sons and this caregiving was described as an important part of participants’ composite identities. As a disabled person who requires daily formal support, Janis said she ‘like[s] being the favour-giver’ as it ‘almost feels extra-nice to feel that you’re doing something beneficial for someone’. Similarly, Mary, who has a rota of care workers in her home, placed enormous value on her on need to ‘to be caring as well’, as care practices are ‘life-giving’. This runs against the ‘traditional’ that disabled people ‘all have to be minded and looked after’ (Lisa).
Reflecting the diversity of caregiving practices, participants undertook significant care within their families – often within spaces of the home – including providing emotional support to their parents and siblings, childcare for nieces and nephews, financial assistance and supporting family members with household tasks, particularly around technology. Acknowledging Runswick-Cole et al.’s (2024, 39) call to recognise the ‘threads of love’ which weave through care relationships, such caregiving within the family was described by Catherine as based in ‘a loving relationship’ in which ‘there’s sentiment’ and caring is ‘something you do for the people that you love’. Participants framed their family caregiving as rooted in reciprocity, part of how ‘we all give back’ (Janis). Janis referred to the ‘older sister feeling’ she had for her younger sister. Having acquired a disability and requiring support from her sister in her younger years, when she was again able ‘to leave home as a disabled person… I would always support her financially’. Alan similarly supported his sister, particularly during her illness. He identified that his adeptness at providing emotional support related to his identity as a disabled person: ‘I’ve developed so much resilience … I’m able to give that resilience to others’. He was also there to provide practical support, accompanying his sister to hospital appointments or doing school pickups while she had treatment: ‘that was important for me as an uncle to be able to provide that care’.
The changing flows of caregiving within families was illustrated when Janis’ father was diagnosed with an illness, and it became clear to her that ‘it’s … about interdependence’. She and her non-disabled sister ‘supported my parents in different ways’; her sister often taking on housekeeping duties, while Janis ‘would ring her [mother] on the phone … and reassure her’. It was also clear that such caregiving flows, where care receiver becomes care giver, sometimes create tension. As Aisling recounted, while trying to keep her older parents safe during COVID-19 lockdowns, she experienced their resistance to following what their daughter advised – ‘they’d kind of be looking at you, saying, ‘Well, I’m older than you, why are you saying no to me?’. Other participants spoke about providing practical support as their parents aged, getting money from the cash machine, organising their healthcare appointments, doing the shopping and meals, or visiting and providing informal care to parents in nursing homes.
It is clear that disabled people’s real-world caring practices, which support and underpin family relations, challenge dominant discourses embedded in social policy which ‘view disabled people as an inevitable burden on their families’ (Shakespeare 2000, 55). Aisling, who has a sensory impairment and uses assistive technologies, outlined how she used her technological skills to support her ageing father to organise his healthcare. A number of participants also elucidated how their own support/care services enabled them to be more fully involved in family care giving. For example, Lisa is an energetic caregiver for her niece and nephew and while her PAs assist her with this, they would ‘be in the background’, ‘it’s me they [the kids] ask, not the PA’. Such accounts bear witness to the ways in which formal or paid assistance services enable disabled people themselves to engage in informal caregiving. The fragile nature of such formal services was exposed during the pandemic period when many disability services were shuttered and PA/care worker shortages intensified. Some participants recounted how this resulted in them, and many disabled peers, becoming more reliant on family care (i.e., moving back into the family home, or having family members stay in their own home due to the absence of support workers), which undermined their capacity to continue their own caregiving.
Expanding relations of care beyond the family to the ‘co-presence’ of friends (Bowlby 2011, 611), participants described similar caregiving practices for friends and neighbours, with particular emphasis on providing a supportive listening ear, care during friends’ mental health challenges and support with day-to-day issues. Gemma described caring for a close friend by providing food and other practical things, ‘because he is a friend of mine and I know that if I don’t do it his own family don’t’. Janis also explained how her neighbour would often borrow money to get her from one pay cheque to another. To reciprocate, her neighbour, who worked as a PA, would help get Janis out of bed if she was ‘stuck’. Describing his web of caregiving to neighbours and friends, Alan jokingly admitted it could ‘sound like I’m caring for the whole world’. For example, while he often made food for his older neighbour, she too looked after him, ensuring that on Friday evenings ‘she’d have a bowl of Doritos and a bottle of Corona’ for when he dropped by. When she died it left a ‘void’ as ‘she was caring for me and I was caring for her’. Further, he described his relationship with his best school friend as, ‘he’s my physical support and I’m his mental support’. When his friend was low Alan would be there for him, just as when Alan’s wife was away and he had no PA cover, his friend would be on hand. The value placed on informal caregiving within this wider non-familial network was epitomised by Janis who said that being regularly asked to collect a friend’s child from school made her ‘feel like a grown up’ and represented that ‘she trusted me so much’.
Participants were conscious of building and sustaining relationships with their PAs and care workers, such as through giving emotional care when issues emerged in their support workers’ personal lives. As Shakespeare, Stöckl and Porter (2018, 165) and others have highlighted, PA relationships are much more than a ‘commodified support relationship’ but are shaped by ‘emotional, social and cultural dynamics’ (see also Shakespeare 2013; Ungerson 1999). Revealing the porous boundaries between formal and informal care, participants described the complexities of combining management of support staff with concern for their welfare. Catherine, for example, spoke about her approach with her PAs – ‘direct[ing] them in telling them… what I wanted doing, how to do it’ but also to ‘make sure it’s a very comfortable environment’ for them. During the pandemic, participants experienced a heightened need to care for support workers. Given requirements for increased hygiene, Gemma remembered how hand washing and mask wearing was a way she ‘was minding them [PAs]… and they were minding me’.
While the interchange between receiving and giving care from/to formal carers and PAs was often described as beneficial, such interactions, specifically within current fractured welfare systems, could also create discomfort (see, for example, Thompson 2022). For example, Janis recognised that she felt ‘a sense of obligation’ to certain PAs, which was tied to the increasing insecurity of services, because ‘if you don’t have an adequate PA support then that compromise becomes almost like a version of family [care] – … it feels unequal’. Care responsibilities towards support workers was also evident beyond one-to-one relations when participants spoke to the need – and their desire – for better overall conditions and pay for support workers, including ‘getting staff to maybe identify what would need to change for them to feel more valued in their job’ (Janis). Through these narratives, many participants therefore articulated that good care could only be provided ‘when the disabled person has a genuine say in what support is provided and the assistant is paid and trained in an adequate way to be responsive to the disabled person and valued for being able to do so’ (McLaughlin 2020, 409). In other words, the needs of both those who receive PA services and those who provide them have to be identified, and material resources put in place to enable relations of support to flourish (410; see also Kittay 2019).
Care relations within the disability community, wider society and the planet
Caring for other disabled people and for the wider disability community was also a key practise and value of participants. Caregiving for other disabled peers included providing support at a time of diagnosis of health conditions, helping others to advocate for services and creating peer spaces for ongoing support. For the disability community, participants described collective activism for practise and policy change and actions to develop Disabled Persons’ Organisations (DPOs). Many participants described how they used their own lived experience and practical expertise to support others who had similar impairments. Catherine described her drive to ‘make sure that they [disabled people] will get as much as they can when they need support, whether it’s human or a piece of technology or whatever’. Aisling identified that her visual impairment led many non-disabled people to challenge her ability to assist others. Yet, as she would counter, ‘I have the experience’ and thus has an ability to support ‘somebody who’s coming up behind me’. On the morning of Alan’s research interview, he had been contacted by a disabled person living nearby who was ‘really low’ and ‘lost’ and he had arranged to meet them later that day. During pandemic lockdowns, much of this peer support transferred online, which participants recognised enabled a much wider group of disabled people, including younger disabled people and those living in remote areas, to have access to the support of disabled peers (see also Goodley et al. 2023).
Many participants connected their activism within disability politics as a form of care for individual disabled people and the wider disability community. Reflecting the multi-scalar nature of disabled people’s engagement and activism, Gemma described herself as a ‘an activist in the disability movement on a national and a local basis from the age of my early twenties’. In a voluntary capacity she was engaged in ‘work on the ground to build confidence of disabled people’. Lisa had also spent many years organising adventure holidays for young disabled people and was a regular at protests and demonstrations demanding additional disability services. Gemma explained that much of her activism had arisen from her understanding that ‘the power is with the people, but the people haven’t got a chance to ensure that power or to realise that power until they actually have time to analyse what’s going on’. This led her to creative work, including devising plays in which disabled people narrated their own recommendations for change, as well as an ongoing focus on pushing service providers to accept disabled people as leaders of their PAS. A significant motivation for this community caregiving was to create better situations for disabled people. Catherine described how her activism and her care for others was connected – ‘I am an activist… I do care about changing the system… And I do care that the people I work with – I do care for them in a way that I want them to get what they deserve’.
Caregiving for the disability community was formalised within the voluntary and paid work in DPOs of a number of participants. In this work, participants were responding to the needs of disabled peers, such as Alan creating platforms for disabled people to influence policy and practise, Janis engaging in political lobbying to achieve better access to PAS and Catherine working with disabled people to challenge the coercive behaviours of some disability service providers. Such collective caring was underpinned by desires to progress disabled people’s independence in a context of increased welfare precarity (Macpherson et al. 2023). This was articulated by Lisa who identified that the biggest need as ‘disabled activists’ was to ensure the ‘next generation of disabled people …realise that their life is worth living’. Catherine framed this work as ‘all about disabled people, it’s empowerment and capacity building’. Janis’ core goal was ‘organising collective spaces for disabled people to come together [for] peer support’ which would ultimately lead to additional DPO infrastructures for disabled people.
Connecting with this desire to improve landscapes of care, Lily had worked as a community healthcare assistant prior to acquiring her disability. She took up this work following the poor experience of her father in a nursing home during his final years, thinking ‘maybe that I could help maybe one person not end up like my dad did’. Supporting people in their own homes was a wonderful experience: ‘I found my calling in life! I loved it. The money was rubbish. And the hours were awful…, but I absolutely loved it’. She described a close connection with those she cared for, finding these one-to-one relationships of care ‘cut all of the nonsense out. When you were that sort of intimate with somebody it allowed for honesty and a sense of being real’. Despite the difficulties of working for private care companies, which were ‘money driven’ and put her under immense pressure, she described the benefits for her as a formal care giver, in which the engagement with others was ‘the part of the job that was so beautiful’. Through having ‘that human touch, that human connection with another’, ‘I feel good’.
Participants were also embedded in care relations with non-humans and for the planet. Gemma, a self-defined ‘animal lover’ with three cats and a dog, highlighted her caregiving for ‘my environment, my animals’ and was conscious of her ‘duty’ to be sustainable, reflecting Puig de la Bellacasa’s (2017) call for an ethic of care that extends to the more-than-human. Such care was portrayed as life-affirming, as ‘when you have an animal and you’re disabled, it’s an extra layer of responsibility’ (Gemma). These wider care relations beyond the one-to-one engagements and care for the disability community, were also reflected in participants’ wider activism. Locally, Gemma, who was ‘an activist with the people’s movement, social justice, and other different movements’ was keen to ensure that all local people are involved in community developments, which she does by ‘making sure we knock on doors’ to inform and make sure everyone can have their say. Long-time activist Lisa also detailed her engagement with protests and marches for many years, to progress disability issues but also wider societal issues, such as the cost of living.
Overall, participants’ descriptions of their caregiving practices make visible the interdependency and reciprocity within care relations, particularly within families (through practical and emotional care) and within the disability community (via peer support to disabled individuals and activism for the collective). Their narratives reveal the extent of caregiving undertaken by disabled people: in child-rearing and childcare as mothers, fathers, aunts and uncles; care for siblings during childhood, times of personal and financial crisis and illness; care for older parents and neighbours living at home and in nursing homes; emotional and practical care for friends; activism as care for disabled people through sustaining networks for independent living and developing DPOs; and care delivered through paid work in peer support and policy advocacy. Disabled people’s lives then are shaped by a range of informal care practices and identities that operate in a range of spaces. These also necessarily intertwine with formal spaces and relationships of support and care. This can be witnessed in the reciprocal relationships that exist between PAs and disabled people, but also ways in which disabled people’s caregiving facilitates access to, or in some cases, fills deficits created by, formal care services.
Conclusion: Towards a ‘Caring Citizenship’?
In this paper, we have sought to unsettle societal constructions of disabled people as passive care receivers by exploring the diverse care relations and practices that shape disabled people’s everyday lives. In focussing particularly on disabled people’s caregiving, we do not seek to reify or reinforce dyadic categories of care giver and receiver; rather, in seeking to dismantle them, we believe it is important to discuss caregiving narratives as a counterbalance to the dominance of discourses that only position disabled people as dependent recipients of care (Clifford Simplican 2018; Runswick-Cole et al. 2024; Ward 2011). Our findings raise a number of important points and questions in terms of how we further interrogate and think about disabled people’s care practices. Firstly, it is apparent that within disabled people’s everyday lives, a ‘multiplicity of intermingled caring relationships and responsibilities are being enacted, often simultaneously’ (Bowlby et al. 2022, 1177); these include a diversity of caregiving relations, from care for animals, to neighbours, PAs, and family members. Thus, participants’ care practices stretched beyond one-to-one personal care relationships and spaces such as the home, for example, to their engagement in wider social and political networks and issues of societal concern. This diversity of practices – and the mutuality that underpins them – is rarely acknowledged in public and political narratives around disability, or indeed, in welfare infrastructures which increasingly restrict PA and care services to everyday tasks of personal care. Thus, there remains a key task to interrogate and make visible the significant and diverse care labour engaged in by disabled people.
Second, it is clear that in talking about disabled people’s care relations, spaces of formal care, or formal (paid) support relationships (such as provision of PA services) overlap with informal care networks and practices in complex ways. While it is important not to minimise the inequitable power relations that can exist in some formal support relationships, nor the tensions or ‘fragilities’ (Thompson 2022, 1134) of these relational dynamics, our research demonstrates the mutuality and reciprocity that can exist in these care relationships. In a wider context of societal care deficits, moreover, disabled people in our study also took up support roles – looking after children in an absence of childcare, facilitating older parents to engage with healthcare services, and actively creating new spaces of care through their activism. Indeed, through their collective action in campaigning for greater access to PA services or recognising the need for better pay for support workers, for example, disabled people are actively creating politicised spaces of care and challenging increasingly marketized and deficit-based models of welfare provision.
Taking these two points together, we might ask how we can envision what Sevenhuijsen (2003, 193) terms a ‘caring citizenship’ (see also Daly 2022) which recognises the labour undertaken by everyone engaged in care as a practise and value central to the functioning of society. As Ward (2011, 2015) has highlighted, caregiving in and of itself is a key way in which disabled people should be valued for their contribution to society as equal citizens; re-envisioned, it might also be a basis for disabled people’s collective political activism (Piepzna-Samarasinha 2018). In practical terms, initiatives such as a Universal Basic Income scheme as proposed by Ireland’s Citizens’ Assembly on Gender Equality, may be a way in which to recognise and reward the more informal, reciprocal, but equally vital care work provided by all citizens, including disabled people (Citizens’ Assembly 2021). However, this will also require that we continue to challenge and subvert hegemonic constructions of care givers and receivers, by making visible the complex dynamics of real-world care relations that shape disabled people’s lives.
Notes
[1] We recognise the politics of language that exists around disability and use the term ‘disabled people’ to reflect the collective and political identity that comes from recognising disability as form of oppression created by disabling societal attitudes and barriers towards people with impairments. ‘Disabled people’ is the preferred term used by Disabled Persons’ Organisations (organisations led by disabled people) in Ireland. In using this term, we are also cognisant of the heterogeneity of the experience of impairment and disability, and its intersection with other axes of identity.
Acknowledgements
This paper forms one output of the three-year CareVisions research project based at University College Cork. We would like to sincerely thank all the participants for their time and commitment to the study and to our colleagues on the wider CareVisions research team. We would also like to acknowledge the input of participants at the 6th Transforming Care conference in June 2023 who provided such helpful feedback on an initial draft of the paper.
Funding Information
The research was funded by the Carolan Research Trust.
Competing Interests
The authors have no competing interests to declare.
Author Contributions
All authors contributed to the conceptualisation, methodological design, data collection and analysis, and writing of the article.