Energy Impairment and Disability Inclusion: towards an advocacy movement for energy limiting chronic illness

Abstract

Grassroots networks and communities for people with chronic illness have emerged in recent years thanks to digital communication technologies. The Chronic Illness Inclusion Project (CIIP) was a participatory research programme led by and for this community. It was the first of its kind to explore issues of disability identity and disablism facing people with chronic illness within the emancipatory disability research tradition. The research agenda centred on distinguishing impairment effects with chronic illness from disablism: the unnecessary restrictions and exclusion produced by society’s response to chronic illness, and consequently identifying pathways for resistance and social change. METHODOLOGY: An online qualitative research forum was designed to facilitate remote and asynchronous participation, and enable extensive interpersonal exchange between 20 participants over eight weeks. A follow up survey was conducted to test and validate the knowledge shared in the forum, yielding 2,300 responses. FINDINGS: Participants with a broad range of health conditions experienced energy limitation which significantly restricts both physical and cognitive activity. They also commonly experienced invalidation and disbelief of these impairment effects at social, structural and institutional level. Systemic disbelief functioned as a form of disablism with a profound effect on identity, self-esteem and relationships. It negatively impacted their ability to navigate systems of disability support and accommodations. Better conceptual tools for locating chronic illness impairment within the administrative framework of disability emerged as a key priority for challenging disablism. The terms ‘energy limiting chronic illness’ and ‘energy impairment’ received the highest approval for this purpose. DISCUSSION: Government surveys confirm the prevalence of energy impairment, which is reported by 34% of the UK’s disabled population. Yet this large constituency is not accounted for in social administration, policy and planning on disability, nor does the online chronic illness community have any vehicle for representation in this sphere. CONCLUSION: The CIIP and the impairment concepts that arose from it suggest the can be seen as a nascent advocacy movement for people with chronic illness, defined not by the cause of disease but rooted in common embodied experiences and resistance to disablism. Governments should incorporate the concept of energy impairment into disability data collection, policy and planning to transform provision and support for this population.

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