A change of leadership for Chronic Illness Inclusion

Head and shoulders Photo of Catherine Hale

Stepping down as Director of CII

Catherine Hale writes:

Five years after I founded Chronic Illness Inclusion I am stepping down as Director of the organisation. CII started life as a research project, but it was always imagined as more than a one-off project. From the start, it was about building a platform to have our voices heard by professionals and policy makers. It was born from my sense, back in 2016, that the chronic illness community and the disability rights movement were too far apart. And from the realisation that this made it too easy, in times of austerity, to exclude chronic illness from systems of disability support and rights. As an advocacy movement, we exist to combat the idea that chronic illness is not a ‘proper disability’.

It was clear from the research that people saw CII as a ‘voice in the wilderness’, and that our work needed to continue. So, after the research funding ended in 2020, the Advisory Group formed a user-led Disabled People’s Organisation, joining networks of other DPOs. For two years we have continued to represent and advocate for people with energy limiting conditions (ELCs) and chronic illness, with almost no funding. We have explored partnerships to enable us build and grow the organisation. This is still a work in progress and I’m very grateful that others in CII have the passion to take it forward.

The last five years have been the most exciting and fulfilling of my working life. The support from this amazing community has kept my sense of mission going strong. But now I am burnt out. Earlier this year I had reached the realisation that carrying on as I have been doing, without funding and without resources, was destroying my mental and physical health.

I hope that a key legacy of these five years is the concepts of ELCs or energy limiting chronic illness (ELCI) and energy impairment. I see them as key to advocating for ourselves, reframing public understandings of ‘fatigue’, and highlighting the shared lived experience of a great number of disabled people with many different diagnoses and none. I hope these concepts serve to unite different chronic illness communities to fight together for social justice.

The disappointment I’m left with is that these ideas seem too radical for funding bodies to grasp and fit within their tick box of causes, especially in these politically and economically very challenging times. Disability itself seems to lag behind other social justice issues in public awareness, leaving no space at all for invisible, fluctuating, energy-limiting disability.

It’s now time for a new leadership at CII and I hope you will keep giving the team all your encouragement and support.

As I leave this role I would like to take a moment to personally thank the DRILL programme panellists who took a chance on my vision back in 2016 to sponsor the Chronic Illness Inclusion Project; to the National Lottery who provided the funding; to Simon Duffy and the Centre for Welfare Reform, (now Citizen Network) who hosted and mentored the project, and to co-researchers Jenny Lyus and Stef Benstead for doing the thinking with me in the early days. CII owes so much to the wonderful folks in the advisory group and founding membership(too many to list!), who shared the vision and values of CII and contributed to the body of work you can find on our website, notably Anna Ruddock and Leonora Gunn, and of course to the brilliant executive committee members: Fran Springfield, Simon Lydiard, Kathy Bole and Helen Whitehead, who have steered us toward becoming an independent organisation. And, last but not least, I’m very grateful to the people and organisations we’ve partnered with over the years: Jo Ingold and Kate Hardy from Deakin/Leeds University, the HEAR Network, Disability Rights UK, especially Fazilet Hadi and Evan Odell, and Bethan Evans at Liverpool University; to allies from the disability movement who believed in and supported CII: especially Jenny Morris, Ellen Clifford and Liz Sayce, and to volunteers Pippa Stacey, Paddy Kuun and Joel Lamy for their commitment and precious energy.

I’m thrilled that the Disbelief and Disregard project, based at Liverpool and Liverpool Hope Universities, has received a British Academy/Leverhulme grant to explore injustice and inequality in healthcare and beyond, drawing on the hundreds of testimonies of women with ELCI that we collected last year.

I give a huge salute to Fran, Simon and Kathy for taking CII on to its next phase.

I will be working for Astriid, a brilliant small charity that matches candidates with long-term conditions with meaningful work, joining a team with strong lived experience of ELCs. I look forward to developing and growing awareness of ELCs in the workplace.