Being just their hands? Personal assistance for disabled people as bodywork

Abstract

Drawing on the notion of bodywork, we analyse the bodily aspects of personal assistance to expand the dialogue between medical sociology and disability studies. We aim to, firstly, overcome the lack of attention to the bodywork of personal assistant (PAs) in disability studies; secondly, explore the micropolitics of personal assistance and the role of independent living mandates in configuring this bodywork of PAs; and, thirdly, propose a more relational and material approach to the impairment/disability debate. This exploration is based on qualitative semi-structured interviews with 23 PAs conducted in Spain between 2018 and 2020. Our research reveals that PAs' bodywork implies performing their body as body-absence, such as when they enact body-tool and body-prosthesis figurations, but also as body-presence, for instance, as acting bodies and affected/affecting bodies in specific situations.Through their analysis, we foreground how PAs' bodywork conveys normative ways of enacting the body and how these body figurations are not only challenged and negotiated but define the actual practice of personal assistance. To conclude, we stress on the theoretical

Introduction to special issue: New dialogues between medical sociology and disability studies

“…The other article drawing care back into consideration is by García‐Santesmases et al. (2023). The authors utilise Twigg’s (2000) concept of ‘body work’ to examine the embodied care practices of personal assistants in Spain.…”

“…independent living welfare policies in Spain). It is in such arrangements, the authors claim, that ‘the employer and the PA’s bodies are mutually configured’ (2023, p. 1336). They argue that performing the roles of ‘body‐tool’ and ‘body‐prosthesis’ requires a specific type of personal assistance bodywork—what they call ‘performing body‐absence’, where the personal assistants must contort their bodies to be physically present yet symbolically and emotionally absent (2023, p. 1341).…”

“…It is in such arrangements, the authors claim, that ‘the employer and the PA’s bodies are mutually configured’ (2023, p. 1336). They argue that performing the roles of ‘body‐tool’ and ‘body‐prosthesis’ requires a specific type of personal assistance bodywork—what they call ‘performing body‐absence’, where the personal assistants must contort their bodies to be physically present yet symbolically and emotionally absent (2023, p. 1341). At other times, personal assistants must perform a mode of ‘body‐presence’, where they recognise their own discomfort when asked to perform particular tasks (2023, p. 1345).…”

“…(2023), there is an affective element shaped by the social position and context of the personal assistant‐employer relationship. Here, García‐Santesmases and colleagues contend, both ‘the carer’ and ‘the cared for’ might be in a position of vulnerability; the former risks becoming exploited if demands for availability and flexibility are too high or if working conditions are poor, whilst the latter risks being dependent on the personal assistant to perform everyday activities of daily living for them (2023, p. 1349). It is by showing these tensions that García‐Santesmases and colleagues point out the need for both disability studies and medical sociology to develop a more relational and materialist conceptualisation of disabled people and their bodies.…”

“…We also believe that disability continues to be marginalised in academic circles. Given the relevance that disability holds for conceptual, methodological and empirical debates across the social sciences and particularly in sociology, this is frustrating and, arguably, a form of 'epistemic injustice' (Fricker, 2007)-a concept drawn upon in the special issue. This is not to say that sociologists and related others have always ignored disability (Barnes, 1998(Barnes, , 2012Hughes, 2009;Hughes & Paterson, 1997;Meekosha, 2011;Shakespeare, 2006;Shildrick, 2005).…”