A major survey has shown the significant – and often unique – barriers faced by people with energy-limiting conditions (ELC).
Nearly every survey respondent (98 per cent) said that lack of understanding of ELC was a barrier to inclusion.
The second biggest barrier revealed by the survey was the “invalidation and disbelief” they face from the public, employers, and social security, health and social care professionals.
The survey of more than 1,700 people with energy-limiting chronic illness and other forms of energy-related impairment was carried out by the disabled people’s organisations Chronic Illness Inclusion (CII) and Disability Rights UK (DR UK).
They say in a new report – Removing Societal Barriers for Disabled People with Energy-Limiting Conditions (PDF) – that the findings show how the “vast majority of disabled people with energy-limiting conditions (ELC) encounter socially constructed barriers to wellbeing and participation in society”.
Many of the barriers are “unique” to people with ELC, the report says.
More than four in five respondents reported facing societal barriers – at least to some extent – to education, healthcare, income security, getting out, and socialising with friends and family.
A similar number reported facing barriers to income security, including through the benefits system, and more than three-quarters of respondents said they faced barriers to accessing social care.
The report says the stigma of disbelief and the dismissal of lived experience by healthcare professionals are too often traced back to a “medical approach” to ELC.
And it warns that people with ELC will remain “invisible, marginalised and neglected as a group” until more attention is paid to disabled people’s lived experience of impairment, rather than their diagnostic label.
Among the report’s recommendations is a call for training for Department for Work and Pensions (DWP) benefit assessors and decision-makers on the impact of ELC on work and daily living, and for DWP to commission specialist employment support for people with ELC.
It also calls on the government’s Disability Unit to engage with user-led organisations for people with ELC – like CII – and to run awareness campaigns to improve attitudes to ELC and other invisible impairments.
The Department for Transport should consult with people with ELC on increasing provision of seating, public toilets and accessible parking bays, so as to improve the accessibility of public transport and public spaces, the report says.
And it calls on the Department of Health and Social care to provide training for health and social care professionals that is led by people with ELC.
Catherine Hale, CII’s director, who wrote the report, said: “Many of the solutions are relatively simple, including more seating, less ambient noise, and easier access to the blue badge scheme.
“Employment opportunities for people with energy-limiting conditions can also be increased by relatively simple flexible working solutions such as remote working.
“The COVID-19 lockdowns showed us how easily this can be done when the collective will is there.”
But she added: “Until energy-limiting conditions are seen and understood as a type of disability, the adjustments and accommodations needed for greater access and inclusion will remain out of reach of those who need them.”
Kamran Mallick, DR UK’s chief executive, added: “The tragic emergence of Long Covid as an enduring legacy of the pandemic makes the case for action even more urgent.
“We must now act together, with stakeholders from various energy-limiting condition communities alongside disability rights experts, to strengthen and deliver rights and support for people with energy-limiting conditions so they are not left behind.”
Picture: Kamran Mallick (left) and Catherine Hale
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