Chronic Illness Inclusion Project

Chronic Illness Inclusion Project

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That which divides us

The Chronic Illness Inclusion Project spoke at an event hosted by Disabled People Against Cuts to discuss the need to reinvigorate the social model of disability.

This blog piece follows a discussion on the 6th of July 2020 in response to Ellen Clifford’s new book ‘The War on Disabled People’ from Disabled People Against Cuts (DPAC) about ‘Reinvigorating the Social Model of Disability’, to which Catherine was invited. You can watch Part 1 here and Part 2 here.

We completely agree with Ellen Clifford that the social model of disability is intended to be a tool for uniting disabled people to take collective action. Now is a time for such unity if ever there was one. The global response to COVID-19, on top of ten years of austerity in the UK, has shown just how little disabled lives matter to the political classes. However, people with chronic illnesses have struggled to unite with other disabled people under the banner of the social model.

Catherine founded the Chronic Illness Inclusion Project as a programme of action research aimed at developing an advocacy movement for people with chronic illness. The project discovered that, although people with what we call ‘energy limiting chronic illnesses’ (ELCI) are potentially a big constituency of disabled people – 32% of working age disabled people in the UK experience impairment of stamina, breathing or fatigue – there is a disconnect between us and the rest of the UK Disabled People’s Movement (DPM).

When looking at our lived experiences, as opposed to our diagnostic labels, we found that we are united by a common experience of ‘energy impairment’, which means that that we live with a very limited amount of energy that we must budget carefully. This idea is similar to the popular ‘spoon theory’. (You can read more about spoon theory here and about ELCI and energy impairment here

Because energy impairment is so debilitating, people with ELCI often struggle to see how the social model could be relevant to their lives. No amount of changing the external stuff – whether prejudicial attitudes or inaccessible environments – can make enough of a difference to allow many of us to leave our homes, or even our beds. That is a reality it often feels too difficult for the DPM to acknowledge, and so those of us in these situations feel left behind by the Movement. 

We also found that the main form of oppression we experience as a community is invalidation and disbelief of our debilitating energy impairment. The idea that we’re ‘just tired’, or that there is ‘nothing really wrong with us’, is at the root of a lot of our trauma, injustice, exclusion and neglect.

Many people with ELCI experience hostility and violence when trying to identify as ‘disabled’. This comes from benefits assessors, strangers on the street if we use Blue Badge parking, sometimes even our nearest and dearest, and most especially the medical profession when they are unable to explain our diseases. We often end up internalising the message that we’re not really disabled.

This can cause problems for people with ELCI embracing the social model’s distinction between ‘impairment’ and ‘disability’. 

For many of us, saying that we are ‘disabled’ in the everyday sense can be the result of a long battle with disbelief and denial. We feel empowered when we are finally able to say, “I’m disabled, not lazy, or faking, or hysterical.” It can be very jarring to then be told that this is not what it means to be ‘disabled’. In this context, the idea that it is society that disables us and not our bodies can sound a lot like the denial, dismissal and invalidation of our bodily experiences that we face all the time.

However, we did discover that people with ELCI did find social model thinking, if not social model language, very helpful. Everyone agreed that if society responded differently to chronic illness our lives would be much better. The benefits system and the healthcare system were identified as the immediate source of our oppression. And most participants would agree with Ellen that capitalism disables us because our lives are only valued if they’re economically productive.

So how can we reinvigorate the social model to overcome this disconnect within our community?

If we’re going to unite to oppose the war on disabled people in the UK, we need the Movement to include our experiences of both impairment and disability.

Firstly, our experiences of impairment and our language of self-identity needs to be acknowledged and validated by the DPM.

Secondly, we need our experience of oppression to be included in the Movement’s understanding of disability and disablement. Negative attitudes towards disabled people do include ideas of tragedy, pity and othering, but they can also be accusations of faking or cheating, and microaggressions of disbelief towards people with invisible impairments. We believe these are two sides of the same coin.

Lastly, we want our political struggle over diagnosis to be acknowledged and supported by the DPM. How and whether diseases are labelled and diagnosed is a fiercely fought battle between patients and the medical establishment. Medicine and psychiatry assume absolute power to validate or discredit not just our symptoms, but our very selves. The gaslighting and trauma that accompany attempts to get a diagnosis are real and damaging, and it’s not an exaggeration to say that these can be matters of life and death. Without a diagnosis, you have no entitlement to support from social security or social care, and you have no rights as a disabled person. 

As Ellen argues, the medical model versus social model binary is problematic. Setting the social model up as in opposition to medical approaches to disability risks depoliticising medicine. Those whose impairments are self-evident and uncontested might want to leave the medical side of ‘impairment’ out of disability politics, but for us it is part of our oppression. The medical is political.

Right now, our very existence as disabled people is under threat. We have got to find a way to unite and fight not one another, but our common enemy. It’s wonderful to see DPAC leading the way.