Emancipatory disability research
We aim to follow the emancipatory research tradition in Disability Studies. This means research is planned and led by disabled people and our research agenda is informed by our lived experience of chronic illness and disability. Our ultimate aim is to produce knowledge, not for its own sake, but to share with the chronic illness community to help build a social movement for change.
The main result of our research will be a manifesto for change in the policies for, and perceptions of, chronic illness in 2020.
All our research is conducted online, in order to reach and include as many people with chronic illness as possible.
We are using a mix of methodologies: from online focus groups involving intensive discussion with around 20 people, to tick-box surveys that allow us to consult more widely.
Our research includes an element of experiment with the process itself, as we adjust to the constraints and possibilities of energy-limiting chronic illness among both researchers and participants. Our research agenda has evolved in response to this process.
Join our mailing list to hear about opportunities to participate in our research.
Phase one – literature reviews and theoretical background
In May 2018 we published Reclaiming Chronic Illness, a discussion paper exploring how the concept of chronic illness fits within the framework of Disability Studies and disability activism.
“A key aim of the Chronic Illness Inclusion Project is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or disablism (social oppression).”
Read more about the Discussion Paper and responses to it here.
Phase two – chronic illness and the social model of disability
How is disablism or ableism, experienced with chronic illness?
Starting in April 2018 our first focus group explored disability identity with chronic illness and what are factors shaping whether or not we refer to ourselves as disabled. What, if any are our common experiences of impairment and how they affect day to day life? What do participants think about some of the main principles of the social model of disability, such as the separation of impairment and disability; the idea of disabling barriers and structures and the idea that internalising negative social attitudes can have a profound impact on self-esteem and wellbeing?
Phase three – follow up survey
In July 2018 we launched a major survey to test and validate the knowledge and experiences collected in the focus group. The survey aims to:
- determine whether people who report impairment of “stamina/fatigue/breathing” experience impairment and disablism in similar ways.
- to further explore the validity of the concept of Energy Limiting Chronic Illness as an impairment group and a constituency of the Disabled People’s Movement, and
- to ask about social problems, values and priorities for action and change among people with ELCI.
Phase four – benefits and work with chronic illness
How does energy impairment limit capability for work? How do external factors like employer attitudes, government policies, and the way work is organised limit our capability for work? What is the relationship between work, wellbeing and health; what measures and solutions would enable more people with chronic illness to make a meaningful contribution to society through work (whether paid or unpaid)?