“Well, I Am Now Looking after This Bloody Rabbit!”: Re-Storying Care in the Lives of People with Learning Disabilities

1. Introduction

In the United Kingdom (UK) and across the global North’s neoliberal-ableist economies, disabled people are repeatedly required to engage in welfare benefit and service systems in which they are demeaned and diminished to prove they are worthy of publicly funded care (Goodley 2014). As we compose this paper, the UK government continues to threaten welfare benefits and social care support for disabled people (McRae 2025). In public policy discourse, disabled people are almost exclusively storied as passive recipients of care, and care is overwhelmingly narrated as something done to, not by, disabled people (Edwards and Loughane 2024; Grosset et al. under review).

Disability activism and scholarship have a long and complicated relationship with the concept of care (Runswick-Cole et al. 2024a). While care is generally understood as mundane, benevolent and benign (Drotbohm 2022), disabled people have often experienced spaces of care that are deeply intertwined with paternalism, dependency and abuse (Kelly 2011). Disabled people have long been subjected to harm under the guise of ‘care’, in the form of forced sterilisation, painful rehabilitative therapies, physical and emotional abuse, and institutionalisation (ibid.).

Disability activism and scholarship have often rejected the term ‘care’ and focus instead on ‘choice’, ‘control’ and ‘independence’ to navigate a rocky path towards socially just care (Edwards and Loughane 2024). However, ‘something has been lost by critical disability studies scholarship and activism turning its attention away from matters of care’ (McLaughlin 2019, 398). This paper seeks to attend to that sense of loss by paying attention to care in the lives of people with learning disabilities, drawing on critical disability studies and care studies (Nishida 2022; Edwards and Loughane 2024; Runswick-Cole et al. 2024a; Runswick-Cole et al. 2024b; Runswick-Cole et al. In press; Ribenfors et al. 2025).

We seek to explore, recognise and record caring relationships in the lives of people with learning disabilities by paying attention to the care given, as well as the care received by people so labelled (Ward 2011; Ward 2015). Working with people with learning disabilities and with family carers, we have come to understand these relationships through the concept of ‘messy dependency’ (Nishida 2022, 145). Nishdia argues that caring relationships are complex, non-linear, at times uncomfortable, and always messy. We conclude that social care research, which focuses only on carers’ concerns and knowledge without paying attention to the caregiving experiences of those positioned as care recipients, is premised on an ableist logic of care which further dehumanises people with learning disabilities.

2. Literature Review: Care and Disability

In the global North, policy considerations of care rarely acknowledge the contribution and requirements of disabled people as carers (Grosset et al. under review). This is despite evidence that demonstrates that disabled people often care for others (ibid). In the UK, this can be evidenced by the rising numbers of people who claim both Personal Independence Payment and Carer’s Allowance (Gov.UK 2025a; Gov.UK 2025b). Personal Independence Payment (PIP) is a UK benefit paid to disabled people to meet some of the additional costs associated with living with an impairment. Carer’s Allowance is a UK benefit paid to carers who provide more than 35 hours a week of care to a disabled person. The number of people who claim PIP and Carer’s Allowance has risen from 9.88% of those who claim Carer’s Allowance in 2021 to 14.47% in 2024 (Department for Work and Pensions 2024, cited in Grosset et al. under review). It is important to stress that these statistics only report the number of disabled people who care and who claim Carer’s Allowance and PIP. Many disabled people with significant caring responsibilities may not claim Carer’s Allowance or PIP, which means the number of disabled people caring for others is likely to be far higher than the reported figures suggest (ibid).

The exclusion of disabled people from the category of carer is particularly marked in discussions about the lives of people with learning disabilities. Ward (2011) describes how people with learning disabilities are often understood as lacking capacity for self-care, which means the idea that they could be carers is rarely considered. There is limited scholarship focusing on people with learning disabilities as carers of older parents and other family members (Ryan et al. 2024), and Guthrie et al. (2015) report that people with learning disabilities alerted staff to choking incidents in specialist inpatient healthcare settings for people with learning disabilities. And yet, it is almost always the case that, in considerations of care, people with learning disabilities are positioned as ‘always the cared for and never the carer’ (Ward 2011, 168). The care undertaken by people with learning disabilities continues to be widely disregarded, and stereotypical understandings of what it is to live life labelled with a learning disability remain undisturbed (Edwards and Loughane 2024; Cameron et al. under review).

In UK public policy, care is usually constructed as unidirectional, flowing from the (imagined-as-able-bodied) carer to the (imagined-as-disabled) care-receiver, and it is this care dyad imaginary that is often the object of study in research (see, for example, Fleitas et al. 2023; Pristavec 2019). Care framed as a one-way relationship has been challenged as overly simplistic and for failing to capture the relational and dynamic aspects of caring relationships (Tronto and Fisher 1990; Puig de la Bellacasa 2017). A feminist ethic of care recognises that all people exist in ‘nested dependencies’ with one another (Kittay, 2011, 56). Ward (2011) has persuasively argued that relational care ethics can disrupt taken-for-granted assumptions that position people with learning disabilities only as passive recipients of care. She argues that:

The core concepts of interdependence and relationality expose and undermine the binaries which position people as dependent or independent, carer and cared for and which in turn construct the power relationships that render people with learning disabilities as in need of protection (Ward 2011, 178).

Nevertheless, despite the possibilities that relational conceptualisations of care open up for recognising and recording the care given by people with learning disabilities, their care continues to be ignored (Ward 2011; Ward 2015). As Drotbohm (2022) argues, even when relational approaches to care are adopted, questions remain about what counts as relational care and who can participate.

These questions are particularly pertinent in relation to people with learning disabilities. In global North neoliberal societies, people with learning disabilities are frequently positioned as ‘not quite like’ other people (Goodley and Runswick-Cole 2016). People with learning disabilities are denied access to the category of carer in a context where they are excluded from a multiplicity of subject positions associated with being human. People are excluded from the labour market. Only 4.8% are in paid employment (BASE 2023); live in hospitals or placements, not homes (Glasby et al. 2024); are denied the opportunity for intimate relationships (Brown 2024) and experience health and social care inequalities that result in a reduced life expectancy of 20–30 years (White et al. 2023). Systemic disadvantage intersects with other forms of marginalisation; in the UK, the median age for deaths of people with learning disabilities from ethnic minority communities is 34 years old (ibid.). These outcomes reflect the sustained denial or contestation of the humanity of people with learning disabilities (Ryan 2025). For Ryan, the persistent and widespread neglect and micro-violences that culminate in the premature deaths of people with learning disabilities are a form of ‘social murder’, as the conditions that lead to these deaths are known about, extensively documented and not acted upon. There is a wilful disregard for the humanity of people with learning disabilities in service systems, policies and practices (Ibid.). So, when care scholar Tronto (1998, 40) describes care as a ‘species activity that includes everything we do’, it begs the question: who is included in the ‘we’?

Nishida (2022, 130) explains that relational care has often been conceptualised in ways that reinforce the exclusion of disabled people, as ‘interdependency has come to be imagined as a clean-cut reciprocal relationship’. Imagined in this way, relational care serves to marginalise the care of people with learning disabilities who are frequently judged as being unable to engage in ‘clean cut’ reciprocity in caring relationships. In relational models of care, reciprocity may be expected, but as Nishida argues (2022, 130), for many disabled people, the obligation to ‘give back’ is deeply entangled with ableism. And so, it is in this context that Nishida (2022, 145) finds herself arguing against ‘interdependency’ and for the idea that we are all in ‘messy dependency’ with one another. Crucially, the concept of messy dependency does not rely on mutuality or reciprocity; rather, Nishida argues that relationships are complex, non-linear, at times uncomfortable, and always messy. By conceptualising care in this way, Nishida opens up the possibility to think differently about care with people with learning disabilities.

So far, we have considered the ways in which care is a site of (in)justice, as the care given by people with learning disabilities goes unrecognised and unrecorded (Nishida 2022). However, we need to consider the (in)justice associated with moments when the caregiving practices of people with learning disabilities are noticed and recorded. The care given by parents with learning disabilities is subjected to intense scrutiny (Spencer et al. 2024). The view that parents with learning disabilities inherently lack the ability to care for themselves and, therefore, for their children, is pervasive (ibid.). In England, good practice guidance suggests parents with learning disabilities should be able to access support to parent their children for as long as is needed (WTPN 2021). And yet, neoliberal austerity politics stigmatise parents who seek support and see individual parents with learning disabilities’ lack of ‘independence’ and ‘parenting capacity’ as a threat to their children’s ability to thrive (Spencer et al. 2024). The possibility of offering long-term support to parents with learning disabilities and their children is usually storied as unsustainable and as a drain on limited resources (ibid). As a consequence, around 40% of people with learning disabilities have their children removed from their care (Llewellyn and Hindmarsh 2015). As Nishida (2022, 7) argues, when care is used as a mechanism to serve neoliberal political agendas, the spaces of care for people with learning disabilities are, too often, sites where socially just care is denied.

3. The Project: Tired of Spinning Plates? An Exploration of the Mental Health of Older Carers/Adults of People with Learning Disabilities [NIHR: 135008]

We come to this discussion of care in the lives of people with learning disabilities as part of a wider research project, Tired of Spinning Plates, which explored the mental health experiences of family carers of adults with learning disabilities and ran from October 2022 to November 2024 in England.

The project aimed to better understand the experiences of family carers of people with learning disabilities and to explore the type, quality and availability of support for mental health. The project utilised various methods, including interviews, an online exhibition representing carers’ mental health, online storytelling workshops and the creation of digital stories (short films).

Overall, the project revealed the persistent inequalities that shape the lives of people with learning disabilities and their family carers. While family carers often spoke about their love for their family member and the joy of caring, this was rarely reflected in the wider literature (Smith et al. 2024). Family carers also talked about the impact of inadequate services and systems on their lives and the lives of the person they cared for. They talked about the effects of fighting for services and support on their mental health and well-being, which were aggravated by extended periods of care without a break, leading to fears for the future when they could no longer care for the person they loved (Runswick-Cole 2024a). They experienced services and support as lacking even the most subtle acts of kindness and appealed for recognition and support for their caring relationships (Ribenfors et al. 2025).

The project was guided throughout by The Tea and Cake Group. The group, which included six family carers and four people with learning disabilities, met bimonthly throughout the project. The group worked as both the public involvement and engagement group and as a co-researcher group for the project. This meant that the group members played a crucial role by guiding the research process from design to delivery, analysis and dissemination. We also sought their consent to use our conversations during meetings as ‘data’ so that we did not ‘lose’ the insights and expertise they contributed. We understood in the planning stages for the project that the relational nature of care meant the research should be guided by family carers and by people with learning disabilities (Puig de la Bellacasa 2017).

And yet, while we understood the importance of people with learning disabilities participating in the public involvement group and as co-researchers, we did not initially include them in other phases of the research. It was only as the project progressed—crucially, with the guidance of family carers and people with learning disabilities themselves—that it became clear that our research design failed to consider how the care given by people with learning disabilities in their caring relationships might be recognised and recorded (Ward 2015). During a Tea and Cake Group meeting, Emma talked about her experiences of living with other people with learning disabilities. She described looking after a housemate and how she felt it was important because she knew her flatmate well and it gave support workers a break. Carrie, a family carer, commented, ‘It is very striking to hear about the care that Emma is doing for her flatmate and how she supports the support workers. She understands [her flatmate] so well’. Emma and Carrie led us to think more carefully about the care that people with learning disabilities provide and that these entanglements with care, as people who give and receive care, should be reflected in our project data. Carey (2010) suggests academia tends to see people with learning disabilities as different from other people, and their exclusion rests in their ‘condition’. Our restricted consideration underlines how difficult it can be to step outside the pervasiveness of ableist logics of care which cast people with learning disabilities as only ever the passive recipients of care (Nishida 2022).

Three members of the Tea and Cake Group, Sarah, Devi and Daniel, decided they wanted to make their own care-related digital stories. Following ethical approval by the University Research Ethics Committee at the University of Sheffield and a protocol amendment agreed upon with the National Institute for Health and Social Care Research, research team members Martina and Martha supported Sarah, Devi and Daniel in creating digital stories. An Easy Read consent form, information sheet and media release form were produced, and the group was supported in accessing, understanding and completing the forms. Martina and Martha shared a selection of the sibling and parent carers’ films with Sarah, Devi and Daniel. Watching the films together led to a productive discussion about moments of care that mattered to Sarah, Devi and Daniel. They were then supported to create digital stories during three meetings, which focused on story and script development, image and sound choices and reviewing and editing the films before release.

The films can be accessed here: https://sites.google.com/sheffield.ac.uk/tired-of-spinning-plates/films?authuser=0.

The data included here are group meeting notes, including the online Tea and Cake group meetings with family carers and people with learning disabilities and the face-to-face meetings with people with learning disabilities, and the transcripts that accompany the digital stories made by Sarah, Devi and Daniel.

We drew on key features of Braun and Clark’s approach to thematic analysis (Braun and Clark 2006; Braun and Clark 2019), searching for meaningful themes in the data, rather than imposing predefined categories. However, our reading and rereading of the data was shaped by our readings of Nishida’s (2022) concept of ‘messy dependency’ as we searched for moments where care came to matter in the stories (Runswick-Cole et al. in press).

Members of the Tea and Cake Group were asked to comment on the paper.

4. Findings and Discussion

Here, we explore four themes: caring as messy dependency; caring for care; my life, my choice; and the politics of kindness. The themes inevitably intertwine and overlap. We hope that they provide a way of recognising and documenting entanglements in caring relationships which reveal messy stories of care.

5. Conclusion

In this paper, we have sought to pay attention to what is ‘lost’ in wider disability and care scholarship—the care given, as well as received, by people with learning disabilities (McLaughlin, 2019:398; Edwards and Loughane, 2024).

Drawing on critical disability studies and care scholarship (Ward 2011; Nishida 2022; Edwards and Loughane 2024), we seek to disrupt both the dominance of the carer/care receiver binary in the lives of people with learning disabilities and the idea that ‘clean-cut’ reciprocity is possible or desirable. By embracing messy care, we have tried to restory care in the lives of people with learning disabilities through the idea of messy dependency, paying attention to the intricate relations of care in people’s lives. At the same time, we recognise the pragmatic and political power of engaging in the language of individualism, choice and control, which we understand as a form of dis/autonomy (Goodley and Runswick-Cole 2016). Crucially, the recognition of the complexity of caring relationships in the lives of people with learning disabilities has the potential to open up new ways of thinking about the delivery of services and support in ways that ensure that people with learning disabilities’ relations of care.

Throughout the paper, we have reflected on moments where care is a site of (in)justice for people with learning disabilities who are subjected to abuse in the name of care (Kelly 2011) and are left without the care and support they need to lead flourishing lives (Ryan 2025). We have centralised the caregiving done by people with learning disabilities that is too often ignored, diminished and unsupported (Ward 2011; Ward 2015; Nishida 2022).

We now recognise that social care research, which focuses only on carers’ concerns and knowledge without paying attention to the experiences of those positioned as care recipients, is flawed. Such research serves to uphold the dominance of carer/care receiver binary and reproduce ableist logics, which position people with learning disabilities and others who are marginalised as always the passive recipients of care (Nishida 2022). Understanding care through messy dependency in this way opens up new ways of imagining how care is understood and, crucially, how care support can and should be delivered in ways that respect the relations of care that people are entangled in (ibid.).

When we ask questions about the care and support people need to lead flourishing lives, this should include asking questions about how people are supported to engage in caring relationships as people who give as well as receive care. Care is conceptualised as a ‘species activity’ (Tronto 1998, 40), and when people with learning disabilities are excluded from considerations of care this is yet another mechanism through which they are denied access to the category of the human and the human rights which follow (Ryan 2025).

We need to pay attention to kindness in contexts of care, not as something to settle for instead of justice, but as a political practice towards socially just care (Kittay 2022; Nishida 2022). The absence of kindness in health and social care systems reveals the lack of curiosity needed to make human connections with one another (Ribenfors et al. 2025). A turn to kindness as a political practice, inflected with class, race, gender and dis/ability, opens up different ways of thinking about all human connection (ibid.).

Finally, we need to remain attentive to spaces of care as potential sites of (in)justice for disabled people (Nishida 2022). It is important to understand that care may be mundane, but there is nothing benevolent or benign about the everyday relations of care that are (re)produced by the ableist logics which dehumanise people with learning disabilities. This dehumanisation is the result of a failure to recognise people with learning disabilities as carers. It is clear that considerations and spaces of care are always potential sites of (in)justice for marginalised people. Recognising this is the first move towards challenging and preventing the pervasive and persistent everyday harms in care spaces which culminate in discrimination and disadvantage (Ryan 2025).

Competing Interests

The authors have no competing interests to declare.

Author Contributions

All authors have made substantial contributions to the conceptualization, methodology, formal analysis, and writing of the paper.