I was asked to talk about my 'Ways of Working' recently. It turned out to be a brilliant opportunity to connect up so much of my life and my work. Working from bed since 1996 I first developed My Ways of Working in the 90s as a student living with ME. To get around my very poor mental and physical stamina I studied part time, mostly from home, often in bed, in short bursts of concentration interspersed with rest. It may have been a strange existence, but it got me a First Class degree from a top University. However, I soon found out that I was utterly unemployable. Pigs would fly before the Ways of Working that made me a high flying student would be accepted by employers in the graduate jobs market in the late 90s. I had no choice but to claim benefits. Then, in the early 2000s the New Deal for Disabled People came along: a specialist voluntary support scheme for disabled people who want to work. “Yay”, I thought (in those days employment support providers were all f
I founded Chronic Illness Inclusion (CII), an advocacy organisation for people living with energy limiting conditions, chronic illness and pain. CII began life as a funed research project in 2017. From the start, the CII Project mailing list was about building a community of people living with chronic illness and chronic pain who didn't feel represented by existing disability or social justice advocacy organisations. Over the years I, and others, ran various surveys and consultations that gave subscribers the opportunity to have their voice heard on issues such as social policy, disability rights and healthcare services. The level of engagement and participation in research from subscribers to the CII Project list was amazing. Sadly, CII was not viable as a vehicle to continue the research and advocacy work that was at the heart of the initial research project. It was too hard to get funding. Most of all, it was not sustainable for me, as someone living with chronic illness, to le