The Learning Disability Art of Care – centring actors with learning disabilities to develop novel understandings of care

Across five years, Bojana will collaborate with actors from the Welsh  theatre company Hijinx to develop a novel movement-based methodology to explore care as an embodied practice.  

Dr Bojana Daw Srdanovic, Research Associate in the School of Education at the University of Sheffield, has received a Wellcome Early Career Award for a co-produced research project. Across five years, Bojana will collaborate with actors from the Welsh theatre company Hijinx to develop a novel movement-based methodology to explore care as an embodied practice.  

Bojana and the actors from Hijinx will be supported by researchers from the self-advocacy organisations SpeakUp and Barod, as well as theatre practitioners and theorists from the Care Lab. 

The relational dimensions of health inequalities 

Learning-disabled people die, on average, 20 years younger than the general population, with 39% of those deaths deemed avoidable (White et al., 2022). The health inequalities leading to such loss of lives have significant relational dimensions as they are underpinned by stigmatisation, clinicians’ lack of familiarity with learning-disabled people thus-labelled, and the marginalisation of people with learning disabilities in healthcare research. 

Medical education as a key site for addressing health inequalities 

Medical education plays an important role in addressing the relational dimensions of health inequalities by equipping future clinicians with disability literacy to interrogate stigma and enhance their therapeutic relationship with learning-disabled people.

The sensorial and relational aspects of care 

The ideas of embodiment  and relationality are central to care: care (good or bad, given or received) produces sensations and feelings to remind us that the things we call ‘bodies’ and ‘minds’, ‘self’ and ‘other’ are not separate but deeply entwined and dependent on each other. Despite such centrality, the sensorial and relational aspects of care can be difficult to capture, describe and reflect on. Care aesthetics, a rapidly developing area of interdisciplinary inquiry led by the Care Lab, offers a framework to identify, research and theorise care as an embodied and relational practice.

Care as an artful practice 

Care has much in common with performing arts. Both performing arts and care are enacted on, through and between bodies, producing a range of sensations and feelings. Like performing arts, care demands presence, repetition, spontaneity, improvisation, perhaps even playfulness. Thinking about care as a skilled, creative and dynamic practice responds to the wider context of a crisis of care where the life-sustaining labour of carer givers – some of whom have learning disabilities – is routinely undervalued, assumed, and unrecognised. 

Having developed resistant, critical and disability-informed care practices in response to both the disablist oppression they experience and the demands of their artistic practice, actors with learning disabilities are uniquely positioned to advance the idea of care as an artful practice. 

Aims

As a key component of learning disability stigma, the idea of limited expertise, itself a form of epistemic violence, underpins the health inequalities learning-disabled people experience. Yet, when people with learning disabilities appear in health research it is usually as experts-by-experiences, a framing that – though historically valuable – perpetuates the idea that learning-disabled people’s expertise is limited to being affected by learning disability. 

By contrast, in this project learning-disabled co-researchers’ multifaceted expertise as theatre practitioners, artists, innovators, educators, researchers and research leaders is fundamental to all research aims. Thus developing new ways to recognise and articulate the intellectual and artistic contribution of learning-disabled co-researchers, we will advance inclusive research cultures.

Positioning care as a creative and dynamic practice akin to art and using learning-disabled theatre practice as a method, we – a group of researchers and artists with and without learning disabilities – will generate new understandings of care and develop a novel movement-based methodology to investigate care as an embodied practice. 

We will apply this co-produced methodology in research with medical students, exploring how engagement with both movement-based methods and learning-disabled educators may shape how future clinicians understand care and relate to patients whose perspectives may be marginalised or, indeed, entirely overlooked. Seeking to innovate medical education, we will contribute to more inclusive forms of healthcare practice that are sensitive to learning disability and better attuned to the body as not only a site but the instrument of care.

Wellcome Trust, (322227/Z/24/Z), £478,287.00