Why I launched the Chronic Illness Inclusion Project

By Catherine Hale
October 19, 2017

Disabled people are all different. That may sound obvious but politicians need reminding of it sometimes. My experiences and needs as someone with a fluctuating energy-limiting illness are completely different from someone with visual impairment who is fit and well, or someone with learning difficulty, for example. This is why one-size-fits-all disability policy doesn’t work.

The Tories have sought to divide disabled people into the deserving and undeserving with their rhetoric of “those who need help the most”. But, as recent reports by the Equality and Human Rights Commission and the UN Convention on Rights of People with Disabilities show, we are all in it together when it comes the catastrophic impact of austerity policies on our rights to education, work, an adequate standard of living, access to healthcare and many more areas of inequality between disabled and non-disabled people.

So I find myself torn. I am torn between advocating on behalf of all disabled people because of the profound inequalities in life chances we all share, and advocating for the needs of my particular impairment group, because it seems we even more invisible to politicians and policy makers than other disabled people.

Unless you are one of us, you’ve probably never heard of a 'spoonie' and you wouldn’t know that there’s such a thing as the #chronicillness community. It exists entirely in the ether and is formed of people whose main access to social life, peer support, and resistance against oppression is via the internet because they are to a greater or lesser extent housebound by energy-limiting illness.

We’ve been punished by austerity policies because we live with conditions that are often invisible, and whose predominant symptoms of fatigue, pain and malaise are not easy to measure objectively. How do you prove the difference between the common aches, pains and tiredness that are part of the human condition, and the kind of exhaustion that means taking a shower or phoning a friend uses up your whole daily ration of energy and you may need to choose to forgo one to achieve the other?

As with mental health conditions, the difficulty in evidencing our impairment has made us an easy target for reforms to social security driven by a whipped up zeal for rooting out the cheats and the workshy.

My experience as a disabled researcher in this area opened my eyes to the fact that we in the online #chronicillness community don’t exist in the real world of policy making. Unlike other impairment groups, we don’t have our own 'lobby'.

My research on Employment and Support Allowance showed the devastating impact of the sanctions regime on disabled people. But there’s an untold story in the data I collected. I wanted to know how many people facing conditions on our benefits were like me – too unwell to get to jobcentre or attend training – because DWP strangely hadn’t factored in the possibility that someone on sickness benefits might actually be sick. So I asked people what aspect of their health condition made it hard for them to work. And to my surprise “symptoms such as fatigue, pain, breathlessness, nausea or vertigo” were a “main factor” for 55 per cent of respondents, with a further 29 per cent reporting these symptoms affected them “to some extent”. This made the physical illness group roughly the same in size to (and frequently overlapping with) the mental health group, at 56 per cent and 23 per cent respectively. Yet, while 'mental and behavioural disorders' is known by DWP to be the most common reason for ESA claims, energy-limiting illnesses are not grouped together as a category by DWP.

I realised we are many but we are not counted. Our experiences and needs are not even heard, in fact they’ve been actively whitewashed by a distorted 'biopsychosocial model' which frames chronic illness as a form of socially deviant behaviour.

So I’ve chosen a path, and I hope everyone affected will join us. The Chronic Illness Inclusion Project aims to mobilise that vast community of #spoonies and #chronicillness into a collective voice that can speak to those who make decisions about our lives. We aim to go beyond the diagnostic categories like Fibromyalgia, Lyme Disease etc and focus on the common experience and identity that brings us together online to share and support each other.

It’s not because I think people with chronic illness are special and different to other disabled people and need their own splinter group, but because I think we share so much common ground that we should build a bridge and join forces.

The Chronic Illness Inclusion Project is supported by the Centre for Welfare Reform. You can sign up here

* The Chronic Illness inclusion project http://inclusionproject.org.uk/about-us/

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© Catherine Hale is a researcher, writer and campaigner on disability issues. She blogs at Limited Capability.

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