Author: Catherine Hale
The stories and life experiences of people with chronic illness still go untold. Worse, the isolation experienced by so many people with chronic illness, particularly people with energy impairments, leads to radical social invisibility. People's lives are forgotten, discounted or misinterpreted.
The severity of this problem has been highlighted by the development of an increasingly punitive benefits which now works from the assumption that everybody should be in paid work, unless they have the most severe disabilities. Worse, the definition of what counts as a disability has been based on assumptions about how physical impairments cause disability. This means that who counts as a 'disabled person' has become narrower at the same time as the negative consequences of being assessed as 'not really disabled' or only 'a little disabled' have become much more severe.
The importance of the Chronic Illness Inclusion Project is that it can help to give visibility to the experiences of people with energy impairments. As it does so it reveals that the idea of an energy impairment offers a totally different - and much more truthful - analysis of how people's relationship to society creates disability and exclusion. Moreover, it implies that systems of healthcare, community access and social security will need to be radically revised if people with chronic illness are going to be treated as equal citizens.
This report - the first in a series of publications that the project will be releasing in 2019 - makes clear that the challenge of managing severely limited energy makes for a radically different understanding of inclusion.
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The paper is also available for screen readers as a word document click the link: Stories of Our Lives AT, below.
This report was published with support from the National Lottery funded DRILL programme.
The publisher is the Centre for Welfare Reform.
Stories of Our Lives © Catherine Hale 2019.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.