Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.
I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.
CII has written to the BBC to explain why their TV programme caused hurt and distress to disabled people with invisible chronic illness, as well as other hidden impairments.
The Chronic Illness Inclusion Project’s letter to the team behind the controversial episode in the ‘Crip Tales’ series, ‘The Real Deal’ (BBC Four) is co-signed by other Disabled People’s Organisations and service user and patient-led organisations.
The letter asks for constructive dialogue with the team, and others at the BBC, to ensure disabled people with non-visible impairments are portrayed in a positive light in future programming.
Chronic Illness Inclusion 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).
Fran Halsall on the consequences of a late diagnosis and living with multiple chronic conditions.
Humans do not cope well with uncertainty, yet I am forced to confront it every day. People like me, with multiple diagnoses, can find that each new one brings not only clarity but also an extra layer of complexity that can be hard to live with.
When trying to explain my medical situation there are six diseases/disorders to choose from. Yet I often talk about multiple sclerosis first, despite the fact that on any given day it might be the least of my problems. There are reasons for this: people have heard of MS and it is taken seriously. It is an easy shorthand for establishing why my life has not turned out as originally planned.
1. As you say, the meaning we attach to the term “chronic illness” in this project does not reference medical definitions but considers chronic illness as a social identity. Does that make it invalid?
2. And in my struggle to develop a more precise language, such as “energy-limiting chronic illness” or “stamina impairment”, am I creating unnecessary divisions and excluding people who share a common cause, especially people with chronic pain conditions? Why can’t we simply unite under the umbrella of disabled people and fight our common oppression, you might ask?
Leonora Gunn discusses society’s role in improving the lives of the chronically ill.
The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need to be ‘fixed’ or changed to fit in to society, and suggests that society needs to be changed to include everyone.
This might seem like a funny thing for someone like me, with a chronic illness, to believe. Surely illnesses, like ME, need ‘fixing’? And how can it be society’s fault that I am ill?
Ella Sumpter talks about fluctuating mobility levels and reactions to her wheelchair use.
I have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I have so far been left out of.
I have a problem though. I have a very large psychological barrier to actually using it.
So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I’ve already blogged about using a walking stick and my fear of abuse as well as fear of people thinking I use a stick to look more ill and claim extra benefits.
Geoff Jones recalls his experiences of education as a child with severe chronic illness.
Access to education is often overlooked when considering chronic illness and social exclusion. Education is particularly relevant if those affected become ill during childhood. In today’s Britain, where a university education has arguably become the norm, those becoming chronically ill during childhood may find themselves placed at a significant disadvantage, adding to the societal exclusion already imposed through their physical disabilities.
I became ill aged 13 with glandular fever and was subsequently diagnosed with myalgic encephalomyelitis (ME). Over the next three years various attempts were made to provide me with an education, either via home tutoring or part-time attendance at school. Eventually I was sent to a comprehensive with a special unit for those with various medical conditions. Unfortunately, due to a lack of understanding of my condition, I experienced a major relapse and, as I reached the age of 16 shortly afterwards, the educational authorities (probably with some relief) ended their attempts to educate me.
Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.
I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.
As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.
Catherine Hale considers how half a lifetime of chronic illness has changed her understanding of the term ‘disabled’.
I’ve been sick for nearly 30 years. That’s the whole of my adult life. I always thought of myself as ‘disabled’ in the sense of being very incapacitated. During my bedbound phase I couldn’t wash, feed myself, go to the toilet or write my own name; nor could I read, watch TV or have a conversation.
But I never thought of myself as ‘disabled’ in the political sense used by the disabled people’s movement. That is, I never thought the disadvantages I suffered in not having a job, a career, or a social life were due to an infringement of my rights. It didn’t make sense to blame my profound isolation on other people or organisations excluding me unnecessarily or treating me unfairly.