Disablism in the lives of people living with a chronic illness in England and Portugal

Abstract

Disablism in the lives of people living with a chronic illness in England and PortugalThis paper is based on research about the daily lives of people living with chronic illnesses in England and Portugal. Through the first-person narratives of participants, I argue that the lives of people living with debilitating chronic illnesses are affected by disablism, discrimination and exclusion. These aspects affect them in several important realms of life such as lack of or poor social support, difficulties in obtaining reasonable adjustments or the inability to obtain any kind of state support at all. These aspects are also widespread and compound and greatly influence their lives, beyond or in addition to the physical experience of the illness itself. I conclude that it is fundamental to change these structural and policy aspects and that people should have access to what I have termed a paradigm of sustained wellbeing, despite the illness.

Making space for disability studies within a structurally competent medical curriculum: Reflections on Long Covid

“…The 'socially engendered undermining' of disabled persons' wellbeing has been theorised as psycho-emotional disablism, which describes how disablism impacts on psycho-emotional well-being through manifestations of oppression sustained by the psychosocial imaginary and cultural representations of disability (Reeve 2006(Reeve , 2020. Psycho-emotional disablism may manifest as marginalisation and epistemically unjust treatment of chronically ill patient groups within healthcare (Blease, Carel and Geraghty 2017;Buchman, Ho and Goldberg 2017), whereby the detrimental impact on patient wellbeing has also been documented (de Wolfe 2012;Bê 2016;Geraghty and Blease, 2019;Hunt 2020a). A notable argument from within disability studies literature, which will be further explored later in the article, is that structural and psycho-emotional disablism may impact detrimentally on physical as well as psycho-emotional wellbeing, exacerbating impairment and furthering disability (see: Hughes and Paterson 1997;Bê 2016).…”

“…Psycho-emotional disablism may manifest as marginalisation and epistemically unjust treatment of chronically ill patient groups within healthcare (Blease, Carel and Geraghty 2017;Buchman, Ho and Goldberg 2017), whereby the detrimental impact on patient wellbeing has also been documented (de Wolfe 2012;Bê 2016;Geraghty and Blease, 2019;Hunt 2020a). A notable argument from within disability studies literature, which will be further explored later in the article, is that structural and psycho-emotional disablism may impact detrimentally on physical as well as psycho-emotional wellbeing, exacerbating impairment and furthering disability (see: Hughes and Paterson 1997;Bê 2016).…”

“…Whilst the term 'impairment effects' has been applied to explicate restrictions to activity associated with the body as opposed to socially imposed barriers (Thomas 2007), the term 'externally imposed impairment effects' describes impairment effects (such as fatigue and pain) that are generated or worsened by disconfirming, distressing interactions with agents or structures (Bê 2016). Such potential for harm highlights the urgent need for a revised, structurally competent, approach to medical education to inform anti-ableist, equitable and truly patient-centred practice.…”

“…Finally, as previously outlined, disability studies literature can be drawn upon to theorise how structural factors can impact detrimentally on physical as well as psychological health, understood as 'externally imposed impairment effects' (Bê 2016). Such theorising can be complemented by applying a biomedical lens, for example drawing upon the concept of biological embedding and allostatic (over)load which describe how cumulative, often uncontrollable stressors (such as epistemic and broader socio-structural injustice) can, quite literally, 'get under the skin' (Aristizabal et al 2020;Heise et al 2019; see also : Hunt 2020a).…”

(Dis)abling practices and theories?: exploring chronic illness in disability studies

“…This work is not about rejecting that people do need support and an institutional response, instead it is about understanding how care and support can occur without the person being treated an object of intervention. For example how support can move away from being guided by protocols unable to both engage with the individual and the social barriers and inequalities experienced by that individual (Bê 2016;Gomes et al 2016;McKernan, Nash, and Carr 2016). Mach and Paylor, in their paper in this issue, examine how problematic policy interactions occur in the area of Hepatetis C when assessing welfare and evaluating employability.…”