Dis/Entangling Disability, Mental Health, and the Cultural Politics of Care

Abstract

This paper explores how understandings of care can be prefigured through engagements with concepts of ableism and sanism as productive and radical companions for (re)thinking care. Working with family carers and people with learning disabilities as part of a co-produced project based in England: Tired of spinning plates: an exploration of the mental health experiences of adults and/or older carers of adults with learning disabilities (National Institute for Health and Care Research (NIHR) 135080, October 2022-November 2024), we notice the absence of the concepts of ableism and sanism in theorisations of the cultural politics of care. We begin by describing family carers’ complex entanglements with categories of ‘carer’, ‘learning disability’, and ‘mental health’. We draw on theorisations of ableism and sanism to inform our analysis of caring relationships, attending to the dis/temporalities and dis/locations of care and the centrality of dis/political love. We conclude by reflecting on what academics, policy makers and practitioners might learn about caring practices from family carers and people with learning disabilities, crucially acknowledging and embracing the power of dis/political love in caring relationships.

‘Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities

“…Whether or not family carers identify as experiencing mental distress, and regardless of what they understand about the nature and origins of mental distress, their lives are often understood by others through the lens of the biomedical model of mental health and the language of 'burden' and 'burnout' (Marks et al, 2002). Worse still, they feel that mental health labels are used against them to destabilise them and negate their views (Runswick-Cole et al, 2024). Family carers reflected on a multiplicity of perspectives on mental health, sitting with them and taking time to think about the perspectives others had shared.…”

“…This critical approach means that we are committed to troubling the ongoing ontological assumptions that shape the lives of carers of adults with learning disabilities (Haraway, 2016). We are interested in the ways in which 'mental health', 'care' and 'learning disability' are entangled in public policy discourse and the consequences of the uses and abuses of these terms in people's lives (Runswick-Cole et al, 2024). We draw on a number of intersecting critical-theoretical perspectives that we understand as being united by their attempts to reveal, critique and challenge power structures (Bohman, 2021).…”

“…We recognise the persistent marginalisation and abuse of disabled people in contexts of care (Kelly, 2011) and seek to expose and challenge models of deficit and lack that construct the lives of disabled people (Oliver, 1990). We welcome the way that care has been problematised as a site where gendered, classed, raced, economic and social inequalities are reproduced (Drotbohm, 2022), but we know that the experiences of disabled people and family carers are often marginalised within these debates and that theorisations of ableism and sanism are marginalised in conceptualisations of care (Runswick-Cole et al, 2024).…”