Blog: The Chronic Illness Inclusion Project

I’m on my way to Belfast to present the findings of our research to the DRILL team. For someone who works from bed and hasn’t got out and about much for the past 30 years, this feels momentous.

The Chronic Illness Inclusion Project has collected masses of valuable knowledge and data on the lived experience of chronic illness. Four months of online focus groups and a survey of over 2,000 people. This will be the first time we share any of it, in the lead up to our report and manifesto at the end of 2019.

It’s exciting because I think our work is revealing a hidden side to disability: the unhelpful and even hostile attitudes to people with invisible and energy limiting chronic illness and ways these attitudes disable us. I look forward to hearing the response to our presentation. I hope our work will serve to expand understandings of what ableism looks and feels like, and lead to new ways of challenging it.  People with energy limiting conditions are the second largest group of disabled people in the UK so it’s vital that our lived experiences are heard.

It’s also exciting because, as well as looking forward to meeting the DRILL team, I will be meeting our advisory group member and volunteer, Victoria Clutton, for the first time. Most of my colleagues in the CIIP have never met in person before. We collaborate online from different parts of the country. This meeting is a rare opportunity to see each other, and be seen, face to face, and the DRILL team has stopped at nothing to get us here and meet our needs.

It’s also a huge challenge. Will I be wiped out from the travelling? Will I have one of my frequent but random bad days and not be able to do credit to all our work? Even on a good day, I can’t deliver a presentation for more than 5 – 10 mins without my brain shutting down. So I’ve been given extra time as an adjustment.

Our presentation on 5th June is just a small part of an exciting agenda about the legacy of this groundbreaking research programme. I want to hear about the work of others. I want to be part of the conversation. But it’s a full day programme and my overall function is limited to two to three hours at best. The rest of the time I’ll be lying down and/or in a stupor, to put it bluntly. It’s frustrating to have to miss out.

But these challenges aren’t just mine, they are common to the chronic illness community. With all the best support in the world we often just can’t take part in things as we would like to. So hopefully this event will also serve as a vital opportunity to bring to light the access issues faced by people with energy limiting illness and begin a conversation about what inclusion means when barrier removal isn’t enough to enable participation.

Catherine Hale.


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