InitialConditions
Senior Member (Voting Rights)
https://www.centreforwelfarereform....ail&utm_term=0_7303002384-3f6549f63d-78135457
This has just been published.
From the email:
Our report proposes the concepts of energy impairment and energy limiting chronic illness (ELCI). We believe they are important for our identity, inclusion and rights as disabled people.
Energy Impairment and Disability Inclusion was based on research led by disabled people, for disabled people. We conducted in-depth online focus groups and a survey attracting over 2,000 responses.
We adopted the social model of disability as a framework for questioning our experiences. We explored how we are disabled by society, as well as how we are disabled by our bodies. We asked about our participants' priorities for social change, and, most importantly, how we can come together more effectively to advocate for our community.
"My 'real' disability is one I'm sure would not entitle me to use the word 'disabled'"
Our research revealed a paradox: fatigue - or limited energy - is the most debilitating feature of many health conditions. But it is the feature that least entitles us to identify as a disabled person. We conclude that the very idea of "disability" is socially constructed in a way that excludes us.
"None of the systems I have to interact with seem to be designed with people like me, who have chronic illnesses, in mind."
Energy impairment - the experience of having limited energy - unites people with many different diseases and health conditions. People with energy limiting chronic illness are a hidden demographic of disabled people. We have no identity or voice outside of our social media communities. Our experience of impairment is ignored by disability assessment systems, and often not included in disability equality initiatives. More than four in five participants agreed that better understanding of and accounting for chronic illness would significantly improve their quality of life.
"The biggest difference would just be being believed and feeling more deserving of respect in society"
Like other disabled people, people with chronic illness experience forms of oppression that restrict and exclude us on top of the impact of our health condition itself. In particular, we frequently encounter disability denial and disbelief, whether from acquaintances, colleagues, family members or institutions.
Half of our survey respondents said “I feel like an imposter". 85% reported feeling isolated by society’s failure to understand the impact of their condition, and 66% of respondents felt that they risk hostility if they identify as disabled.
"Using the term ‘disabled’ means I can have my life back"
About a half of survey respondents felt that legal obligations to make adjustments for disabled people do not apply to them. And when they did disclose their impairment, participants often found that systems of disability support are not designed for their needs. We argue that in order for people with chronic illness to be respected, supported and included, the concept of energy impairment must be adopted by government and the disability sector.
This has just been published.
From the email:
Our report proposes the concepts of energy impairment and energy limiting chronic illness (ELCI). We believe they are important for our identity, inclusion and rights as disabled people.
Energy Impairment and Disability Inclusion was based on research led by disabled people, for disabled people. We conducted in-depth online focus groups and a survey attracting over 2,000 responses.
We adopted the social model of disability as a framework for questioning our experiences. We explored how we are disabled by society, as well as how we are disabled by our bodies. We asked about our participants' priorities for social change, and, most importantly, how we can come together more effectively to advocate for our community.
"My 'real' disability is one I'm sure would not entitle me to use the word 'disabled'"
Our research revealed a paradox: fatigue - or limited energy - is the most debilitating feature of many health conditions. But it is the feature that least entitles us to identify as a disabled person. We conclude that the very idea of "disability" is socially constructed in a way that excludes us.
"None of the systems I have to interact with seem to be designed with people like me, who have chronic illnesses, in mind."
Energy impairment - the experience of having limited energy - unites people with many different diseases and health conditions. People with energy limiting chronic illness are a hidden demographic of disabled people. We have no identity or voice outside of our social media communities. Our experience of impairment is ignored by disability assessment systems, and often not included in disability equality initiatives. More than four in five participants agreed that better understanding of and accounting for chronic illness would significantly improve their quality of life.
"The biggest difference would just be being believed and feeling more deserving of respect in society"
Like other disabled people, people with chronic illness experience forms of oppression that restrict and exclude us on top of the impact of our health condition itself. In particular, we frequently encounter disability denial and disbelief, whether from acquaintances, colleagues, family members or institutions.
Half of our survey respondents said “I feel like an imposter". 85% reported feeling isolated by society’s failure to understand the impact of their condition, and 66% of respondents felt that they risk hostility if they identify as disabled.
"Using the term ‘disabled’ means I can have my life back"
About a half of survey respondents felt that legal obligations to make adjustments for disabled people do not apply to them. And when they did disclose their impairment, participants often found that systems of disability support are not designed for their needs. We argue that in order for people with chronic illness to be respected, supported and included, the concept of energy impairment must be adopted by government and the disability sector.