Reeve, D. (2009) ‘‘Sick or disabled?’: A discussion of the interaction between chronic illness and psycho-emotional disablism’, paper presented at Disability and Chronic Illness Workshop, University of the West of England, 30 January.

Abstract

Working from within a disability studies perspective, this paper uses the extended social relational definition of disablism (rather than disability) whereby:

‘Disablism is a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being.’ (Thomas, 2007: 73)

Like the social model of disability traditionally used within disability studies, this definition clearly recognises disabling barriers which operate at the structural/material level, affecting what people can do. However, in addition to the more usual public barriers faced by people with impairments, this definition also explicitly recognises barriers which operate at the psycho-emotional (personal) level. Thus someone may be prevented from doing something because of a flight of stairs (structural disablism) or because of the attitudes/stares of others (psycho-emotional disablism).

Disability studies has been criticised for failing to take account of the lived experience of impairment and in particular, for failing to represent adequately the experiences of people living with chronic illness. Similarly, there have been criticisms of medical sociology for neglecting the effects of disablism when discussing the lived experience of people with chronic illness.

In this paper I will discuss some of the issues which arise when considering the potential role of psycho-emotional disablism in the lives of people with chronic illness. I will draw on the narratives of two women with MS and a man with RSD who took part in my doctoral research, to show the complexity of their lived experiences of chronic illness and psycho-emotional disablism.

I show how psycho-emotional disablism is revealed within their accounts of dealing with health professionals and other people, and how it is exposed by the problematic relationships they have with themselves (internalised oppression) as they move between different subject positions such as being disabled, sick or well. In addition psycho-emotional disablism can happen when one is forced to occupy a particular position by others, for example when applying for disability benefits.

However one cannot simply analyse these examples through the lens of disablism alone – it is also necessary to take account of impairment and impairment effects as well as other facets of identity. This is particularly true in the case of chronic illness such as MS with unpredictable ‘good’ and ‘bad’ days; what are the consequences of being ‘disabled’ one day, but ‘able’ the next? I also show how chronic illness can be exacerbated by the experience of psycho-emotional disablism as well as impacting on how people can resist this ‘inner’ dimension of oppression.

Importantly, although someone might not see themselves as disabled, as the examples I discuss show, this does not mean that psycho-emotional disablism will also be absent from the lives of people with chronic illness.

Therefore, when looking at concepts of chronic illness, it is also necessary to take account of the concept of psycho-emotional disablism and vice versa – they do not exist in isolation but interact with each other in a complex manner.