Access and inclusion
“Some disabled people are, and will remain, housebound, long after COVID-19 restrictions have ended. This is true regardless of the progress in disabled people’s right to participate in society achieved under the social model of disability. Many people with energy limiting chronic illness (ELCI) are in this category”
The chronic illness community were experts-by-experience in connecting online long before the pandemic struck.
Then, in March 2020, the world caught up with us. The COVID-19 pandemic triggered a remote access revolution. It enabled entire populations, newly confined to their homes, to stay connected to each other online through digital platforms such as Zoom and Teams.
While disabled people as a whole have been adversely affected by starkly disproportionate deaths and other inequalities during the pandemic, this remote access revolution had the positive effect of levelling the playing field for some disabled people. It afforded us equal participation in many areas of life that we had previously only dreamed of.
“The pandemic has shown that our exclusion is not inevitable. We must seize the opportunity provided by this unexpected remote access revolution to prevent a return to pre-pandemic inequality and exclusion.”
Chronic Illness Inclusion features in this open access volume on Covid-19 and Co-production in health and social care research, policy and practice from Policy Press.
“A place where we could listen to each other and be heard”: enabling remote participation spaces for research and co-production among disabled people with energy impairment beyond COVID-19 by Catherine Hale and Alison Allam
In this chapter we share process and lessons for more inclusive research design and service user involvement in future.
Guidance Paper: Turning the Remote Access Revolution into Reasonable Adjustments
An unexpected outcome of COVID-19 has been the ‘remote access revolution’, in which remote working and online meetings have suddenly become the norm. While this has increased accessibility for people with ELCI in areas such as work, higher education, politics and civic life, many are concerned the option will not continue beyond the pandemic. This would be particularly unacceptable since this form of access is a legal requirement – considered a ‘reasonable adjustment’ under the Equality Act 2010 – although it is one disabled people have long been denied.
London based HEAR Network commissioned Chronic Illness Inclusion to carry out an online questionnaire-based research among ELCI communities in the UK in order to produce this guidance document on including disabled people in face-to-face meetings using videoconferencing technology.
Click on the image below to download a copy of our guidance.
Remote Researchers: Learning from experts-by-experience in digital inclusion
The chronic illness community is invisible to society and to policy-makers – the people who make decisions about our lives. To counteract this, the Chronic Illness Inclusion Project has developed a unique research practice. This practice reaches people who cannot participate in traditional face-to-face focus groups, such as those who are housebound or bedbound. This guide sets out how that research practice works through extended online focus groups, allowing the voices of people with energy limiting chronic illness to be heard for the first time. We hope sharing this practice will allow other researchers to make their research more inclusive of people with ELCI.
Click on the image below to download a copy of our report.