Reclaiming “Chronic illness”
Foreword by Dr Simon Duffy (excerpt)
This discussion paper presents the ideas and assumptions behind the Chronic Illness Inclusion Project (CIIP), part of the DRILL programme of disability research.
My own immersion in online networks of activism and solidarity lead me to give a particular slant to the term ‘chronic illness’, a meaning which is perhaps not universally shared. For me and fellow researchers in the CIIP, having chronic illness means being a ‘spoonie’, that is, having very limited units of energy that must be carefully rationed.
A key aim of the CIIP is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or disablism (social oppression).
Chapter 2 of this paper outlines the concept of limited energy and systemic impairment and proposes the term ‘stamina impairment’ to capture the lived experience of chronic illness.
Chapter 3 suggests that the oppression faced by people who identify as having chronic illness is based on the invisibility of impairment and the unequal relationship between lived experience of our bodies and scientific medical knowledge on illness and disease.
Chapter 4 suggests that chronic illness is a hidden impairment group on the margins of the UK Disabled People’s Movement (DPM) and unaccounted for in social and public policy. It explores the historical and ideological reasons for this marginalisation and proposes that exploring a social model of chronic illness through emancipatory research will help to forge a closer and mutually-beneficial alliance between the DPM and the online chronic illness communities, as well as build a platform for social, political and cultural change based, not on medical diagnostic labels, but on shared experiences, needs and aspirations.
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