This is an emancipatory social research project, conducted among, and led by, members of the online chronic illness community.
Our research is aimed at building collective representation and organisational capacity among the chronic illness community, in order to challenge the social, economic and cultural disadvantages we face. Our research is framed by theoretical concepts from Disability Studies, underpinned by the social model of disability, which understands disability not in the sense of individual misfortune but as a relationship of oppression by society towards people with impairments. (eg Morris 1991; Thomas 1999; Shakespeare 2014). At the same time, we argue that chronic illness is a distinct form of impairment not well accounted for within the UK disabled people’s movement nor within UK social policies addressing disability.
The project involves internet based research into the experience of chronic illness among people who are engaged in social media communities that assemble under the banner of #spoonie (a metaphor for restricted energy)[i] and #chronicillness #chronicpain #invisibleillness as well as disease-specific hashtags[ii]. Numerous studies already attest to the existence, across social media platforms, of communities of meaning, identity and resistance among people whose lives are restricted by chronic illness (Mazanderani et al. 2012; Gonzalez-Polledo 2016; Ytre-arne 2016).
Supported by the Centre for Welfare Reform, this 3 year research project is part of the DRILL programme (Disability Research into Independent Living and Learning).[iii]
Project aims and research questions:
Consciousness raising: What do we want from society in order to live more fully as citizens?
Disability Studies has developed alongside the disabled people’s movement for equal rights over the past 40 years as the theoretical underpinning for social action. However, while people in the emerging chronic illness community are “disabled” under the provisions of the Equality Act 2010, they have largely not been involved in the disabled people’s movement or in the development of Disability Studies. Qualitative research methods will be used to explore whether and how participants translate the social model of disability to the experience of chronic illness. What are the social, political, economic and cultural dimensions of disadvantage with chronic illness? What are our priorities for social change and how can we achieve this?
Influencing policy design: Who are we?
“Chronic illness” exists as a social group with shared experience across social media networks but it does not exist as a category of impairment (such as “learning difficulty” or “autism”) within the UK policy frameworks for disabled people. It is not clear that the related policy terms “fluctuating conditions” and “long term health conditions” adequately captures the lived experience of chronic illness. The first step in achieving better representation and informing policy design on areas such social security, social care and employment support must be to engage in collective self-definition. Through quantitative analysis of experiences and attitudes around disability among people with a long-term health condition we will seek to delineate the characteristics of the “spoonie” or “chronic illness” identity.
Building capacity for self -representation: How do we become visible?
While there is a vibrant online network of communities for people with chronic illness, we have no formal organisation or collective voice. High levels of activity restriction have meant that people with certain forms of chronic illness tend to be excluded both from mainstream public life and from formal organisations for disabled people (DPOs) and disability rights activism. How can internet and social media platforms provide new possibilities for participation, organisation and action among the grassroots chronic illness community?
Research activities and outputs
- Community engagement: from the outset, we will build a broad base of project supporters from the chronic illness community via a website, blog and mailing list. From this mailing list we will recruit participants for both the qualitative and quantitative elements of the research.
- An online discussion forum for up to 20 participants will be the site of qualitative research exploring the experience of chronic illness using themes from Disability Studies. We will explore social, cultural and material barriers to social participation as well as “psycho-emotional” (Thomas 1999) barriers; i.e. how negative cultural messages about chronic illness become internalised and affect how we feel about ourselves and shape our aspirations.
- An online survey among the broad base of supporters will seek to understand and define the characteristics, needs and opinions of the chronic illness community. Subsequent short surveys and polls may be used to test the validity of the data created in the small discussion forum.
- The last phase of the project will be co-producing a manifesto for social change among the broad base of project supporters as well as discussion group participants.
[i] See here for an explanation of the “spoonie” concept http://www.shapingourlives.org.uk/resources/shared-resources/on-spoons-and-spoonies
[ii] The most common health conditions identified with these labels are M.E./CFS, lupus, fibromyalgia, chronic pain, Ehlers Danlos Syndrome.
Gonzalez-Polledo, E., 2016. Chronic Media Worlds: Social Media and the Problem of Pain Communication on Tumblr. Social Media + Society, 2(1), p.205630511662888. Available at: http://journals.sagepub.com/doi/10.1177/2056305116628887 [Accessed February 6, 2017].
Mazanderani, F., Locock, L. & Powell, J., 2012. Being differently the same: The mediation of identity tensions in the sharing of illness experiences. Social Science & Medicine, 74(4), pp.546–553. Available at: http://www.ncbi.nlm.nih.gov/pubmed/22227237 [Accessed February 7, 2017].
Morris, J., 1991. Pride against Prejudice: transforming attitudes to disability, London: The Women’s Press.
Shakespeare, T., 2014. Disability Rights and Wrongs Revisited, London & New York: Routledge.
Thomas, C., 1999. Female Forms: Experiencing and understanding disability, Open University Press.
Ytre-arne, B., 2016. The Social Media Experiences of Long-term Patients : Illness , Identity , and Participation. Nordicom Review, 37, pp.1–14.
[iii] Disability Research on Independent Living and Learning is a five year scheme led by disabled people and funded by Big Lottery Fund.