introductory report from Chronic Illness Inclusion project

[NelliePledge]

http://www.centreforwelfarereform.org/uploads/attachment/617/reclaiming-chronic-illness.pdf

I havent read all this yet

Summary
This discussion paper presents the ideas and assumptions behind the Chronic Illness Inclusion Project (CIIP), part of the DRILL programme of disability research.
1 My own immersion in online networks of activism and solidarity lead me to give a particular slant to the term ‘chronic illness’, a meaning which is perhaps not universally shared. For me and fellow researchers in the CIIP, having chronic illness means being a ‘spoonie’, that is, having very limited units of energy that must be carefully rationed. A key aim of the CIIP 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).
Chapter 2 of this paper outlines the concept of limited energy and systemic impairment and proposes the term ‘stamina impairment’ to capture the lived experience of chronic illness.
Chapter 3 suggests that the oppression faced by people who identify as having chronic illness is based on the invisibility of impairment and the unequal relationship between lived experience of our bodies and scientific medical knowledge on illness and disease.
Chapter 4 suggests that chronic illness is a hidden impairment group on the margins of the UK Disabled People’s Movement (DPM) and unaccounted for in social and public policy. It explores the historical and ideological reasons for this marginalisation and proposes that exploring a social model of chronic illness through emancipatory research will help to forge a closer and mutuallybeneficial alliance between the DPM and the online chronic illness communities, as well as build a platform for social, political and cultural change based, not on medical diagnostic labels, but on shared experiences, needs and aspirations.
RECLAIMING ‘CHRONIC ILLNESS’ A DISCUSSION PAPER FROM THE CENTRE FOR WELFARE REFORM

 

[Andy]

Quite a long read, at least for my attention span. Things that I thought were interesting so far:

Demographic features of chronic illness

The chronic illness identity is not limited to any particular disease or illness. Rather, it transcends diagnostic categories to focus on the experience of impairment. Analysis of hashtag trends indicates that the most common conditions associated with both #chronicillness and #spoonie are (see Appendix 2 for an explanation of this hashtag analysis):
fibromyalgia,

• ME or CFS,
• lupus and chronic pain
• EDS (Ehlers-Danlos Syndrome),
• CRDP (chronic regional pain syndrome),
• POTS (postural orthostatic tachycardia syndrome),
• chronic Lyme Disease,
• Crohn’s disease and
• Irritable Bowel syndromes.

To a lesser extent, rheumatoid arthritis, MS (multiple sclerosis), endometriosis are among other conditions associated conditions.

To prospective participants for our research forum, we posed the question: Do your condition(s) or illness(es) reduce your ability to carry out day-to-day activities?
Out of 153 respondents, 13% said ‘Yes, a little’, 87% said ‘Yes, a lot’ and none said ‘Not at all’.
This further suggests that people self-describing as having ‘chronic illness’ are a subset of people with long term health conditions who have significant activity restriction due to stamina impairment.

However, the limited evidence available suggests that stamina impairment is the second largest impairment type among disabled people of all age groups. Within the caseload of incapacity benefit claimants, this group could be similar in size to the category of Mental and Behavioural Disorders, often cited as the largest group of in receipt of Employment and Support Allowance (ESA) (see Figures 2 and 3).

 

[Andy]

A crucial question to explore within our online focus group is the extent to which society in general, including employers, civil society organisations and government policies, can, and should, make adjustments to enable participation for people who are wholly or largely housebound by stamina impairment.

Correspondingly, what could inclusion and participation look like when one cannot be physically present in spaces of work, community or political action? These questions have barely begun to be addressed by the Disabled People’s Movement. In part, this may be because the internet and communication technologies that enable virtual connection and participation between people who are housebound are still too new and too rudimentary to be part of mainstream access provisions. (The recent livestreamed conference on Ableism in Academia is an example of the possibilities of remote access.2) It must also be explained by a lack of awareness of the impact of stamina impairment in its severe form, that is, preventing people leaving their beds or homes. Our very absence from
society is largely invisible.

The American disability scholar Susan Wendell, who lives with ME, analysed how, in Western scientific medical discourse, subjective experiences of pain and fatigue are deemed irrelevant and even unreliable unless they can be correlated with clinical or laboratory findings of physiopathology or disease. Wendell explains how the social and cognitive authority of Western medicine:
“Affects how we experience our bodies and how society describes our experiences, validating or invalidating them... adding the burden of epistemic invalidation to many people’s experiences of illness and disability.”
Wendell (1996)

From the 1990s onwards, the UK Disabled People’s Movement and the emergent discipline of Disability Studies had very valid reasons for rejecting the concept of ‘chronic illness’. The study of ‘chronic illness and disability’ had, until then, been the terrain of non-disabled researchers in the fields of medical sociology and health psychology. It was dominated by interpretative studies of the experience of 'illness', which focused on individual coping mechanisms, including the management of 'stigma' and other perceived threats to 'self ’ and 'identity' (Barnes & Mercer, 1997).

Even when sympathetic to its subjects and intending to help people adapt to chronic illness and impairment, the study of ‘chronic illness’ conformed to a social deviance paradigm of disability (Thomas, 2012; Barnes, 2012). Embedded in the study of ‘chronic illness’ was a hierarchical relationship between the knowledge produced by professional researchers and that of their research subjects waiting to be elucidated.

 

[Andy]

Tellingly, beyond patient representative organisations for specific diseases, there are no representative organisations for people with chronic illness in the UK. As activist Kaliya Franklin noted:

“The shiny pink elephant in the room of policy makers and certain sectors of the disability lobby is the complete exclusion of sick people from this group.”

When the government consults with disabled people and their organisations on matters of policy or services, there is no one representing people with energy-limiting chronic illness, except for conditions with the highest public profile, such as cancer. In health and social policy discourse, the term ‘long term health conditions’ or ‘long term conditions’ is used to differentiate illness or disease from impairment resulting from injury or genetic inheritance (Bê, 2016). But to those of us involved in the virtual community of chronic illness, the meaning of the term is narrower than ‘long term
health condition’.

This discussion paper is intended to stimulate reaction and debate – from the Disabled People’s Movement (DPM), the Disability Studies community and beyond – to my framing of ‘chronic illness’. The coherence of my concept of chronic illness lies not in medical diagnostic categories but in a shared experience of impairment and disability which is articulated through social media networks using the hashtags #chronicillness and #spoonie.

The core of this impairment experience is significant activity restriction through very limited units of energy which can require extreme rationing, for which I propose the term ‘stamina impairment’. With chronic illness, pain, fatigue and malaise are of a different dimension to that experienced by non-disabled people or by ‘healthy’ disabled people. Therefore, chronic illness is distinct from impairment, rather it involves impairment that affects global function – both physical and cognitive – and is fluctuating and cumulative in nature, rather than localised to a specific limb or organ and
stable.

I believe that the only way for people with chronic illness to have our voices heard and our needs and aspirations accounted for is to adopt a social model of disability. I hope, in turn, that expanding the understanding of disability and disablism to include the experience of people with chronic illness will strengthen and enrich the DPM and the discipline of Disability Studies.

It could be that the hypothesis presented here for the coherence of ‘chronic illness’ as a unit of analysis and action is proved wrong as a result of our forthcoming research. It may be too rooted in my personal experience of living with ME, and have very limited application to other diagnoses. It could be that social and political activism are already too embedded in specific patient communities (HIV, cystic fibrosis, ME, for example) and thatthe impulse to transcend disease labels and find common cause is too weak.

 

[Andy]

For an overview of this document by its author see http://inclusionproject.org.uk/publications/

 

[Andy]

A disabled researcher has suggested a way to bring the hundreds of thousands of people with chronic illness under the umbrella of the disabled people’s movement.

Catherine Hale (pictured), who has lived with a diagnosis of ME for nearly 30 years, hopes that her new discussion paper will build bridges between the disabled people’s movement and the chronic illness community.

She is keen for her paper to “stimulate reaction and debate” from members of the movement, disability studies academics and policy-makers.

Hale suggests in the paper that people with chronic illness can be viewed as having a “stamina impairment” which restricts their activities – despite any treatment regimes they undergo – and that such people could make up the second-largest impairment group of disabled people in the UK.

https://www.disabilitynewsservice.c...ic-illness-community-and-disability-movement/

 

[Andy]

Catherine Hale has had ME for 30 years, and was politicised out of her ‘hermit-like existence’ by the harrowing impact on her life and health of changes to the UK benefits system. Now she runs the Chronic Illness Inclusion Project, the only research project in the UK looking specifically at the political and social situation of chronically ill people. She tells us why ‘spoonie’ will never be taken seriously by politicians, why chronically ill people in the UK desperately need a manifesto for social change, and how the chronic illness and disability movements can best work together.

https://spooniehacker.com/heroes/catherine-working-to-get-uk-spoonies-a-political-platform/