Inclusion for people with chronic illness
“The Chronic Illness Inclusion Project (CIIP) grew out of finding my identity on social media as a “spoonie”. Through online activism, I discovered that so much of my daily reality and my struggle against oppression was shared by people who had different medical diagnoses than mine but a shared experience of chronic illness. I realised that, away from our online movement, there wasn’t a platform in the “real world” for us to join together to fight for change.
I am passionate about the social model of disability and this project is about applying some of its principles to our struggle, building a bridge between the chronic illness movement and the Disabled People’s Movement in the UK, and challenging perceptions and policies around chronic illness generally. I want everyone with chronic illness to live as fully as possible, with dignity and equal worth.”
– Catherine Hale, lead researcher
Read our recent Discussion Paper to explore the background and ideas driving our research and manifesto.
Subscribe to our mailing list to take part in building our manifesto for chronic illness by 2020.
Who we are
Researcher (2018): Stef Benstead
Stef is an independent disability and social security researcher. She has previously worked with the Spartacus Network and has been lead author on a number of their reports… read more.
Web design & editorial: Fran Halsall
Fran has an MA in Landscape Architecture and works on projects related to environment, health and wellbeing She became involved with CIIP because of her own experiences of living with fibromyalgia and multiple sclerosis.
Alison’s academic background is in Disability Studies and Social Policy. She is currently involved in regulation and inspection of health and social care services. Alison has personal experience of living with a chronic illness.
Sarah completed her mathematics studies and then worked as a university academic while juggling both a chronic illness and a physical impairment. This led to a particular interest in how the social model and current support relates to both… read more and read Sarah’s guest post.
Liz Crow is a disabled person and activist-artist working in performance, film, audio and text. She is a doctoral candidate undertaking practice-led research at University of West of England. In 1992, she wrote ‘Renewing the Social Model of Disability’… read more.
Victoria has had ME for 20 years and has recently graduated with a Maths and Computer Science degree from the Open University. She is currently juggling her health, her first job and as much activism as she has the spoons for. Read Victoria’s guest post.
Geoff is a writer who has experienced severe chronic illness since childhood. Geoff was too ill with ME to attend school or manage home tutoring. As his health improved, he found accessing education was dependent on sympathetic personnel… read more and read Geoff’s guest post.
Donna is a disabled Disability Studies academic with experience of living with chronic pain and depression/anxiety. She contributes academic knowledge about ways of doing and analysing research as well as connections to existing literature in the field.
Anna is a writer and anthropologist currently working part-time as a global policy advisor at the Wellcome Trust. When health permits, she is working on a book about health systems and medical education in India. Read Chronic Illness and the Academy.
Fran is a semi-retired Clinical Nurse Specialist. She has been a wheelchair user for over 12 years and has both visible and invisible disabilities. She she is a trainer, speaker and writer on disability equality issues and is Co-Chair of Disability Labour.
Patricia de Wolfe
Patricia has had ME and a collection of other complaints for many years. Some of this time was spent slowly studying for a PhD in medical sociology. She is now a trustee of her local ME group and helps members with benefit applications. Read Patricia’s guest post.
Our project has been featured in the following media:
The London School of Economics and Political Science – Improving disabled people’s employment and pay: changing patterns of campaigning and influencing
Independent Living – Are people with chronic illness marginalised?
Shaping Our Lives – On Spoons and Spoonies (page 8)
BBC ‘Ouch: Disability Talk’ – Rationing energy – and other chronic illness life hacks (podcast)
Disability News Service – Project aims for inclusion and a collective voice for ‘spoonies’