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 Chronic Illness Inclusion, 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.
Q: How did the Chronic Illness Inclusion Project come about?
A: I’ve had ME for the last 30 years, from very severe to moderate. Starting in 2011, I had my life turned upside down by the transition from Incapacity Benefit to ESA. I got politicised out of my hermit-like existence by this experience. I became an activist researcher of welfare and disability policy and I came in to join the amazing Spartacus Network of disability researchers around 2013. We never said so publicly, but we were all spoonies. I came to identify as a spoonie more than a PwME (person with ME) because I realised that, despite our different diagnoses, we all shared a very common experience of disability and faced very similar injustices and oppression. I learned, for example, that the traumatic experience of being disbelieved affects many other spoonies, not just PwME.
Through further involvement in policy work, I realised that, unlike other groups of disabled people, we spoonies don’t have a platform from which to lobby government and policy makers. That’s partly what drove the aim of the Chronic Illness Inclusion Project.
The traumatic experience of being disbelieved affects many other spoonies, not just PwME.
During this time, I ‘met’ Simon Duffy through Twitter. His background is working with people with learning disabilities, but he recognised that people with chronic illness face a similar level of social exclusion. He passionately believes that we need a movement for spoonies. To tell you the truth, I would never have gone down the path of exploring my own disability and my oppression so closely if it weren’t for his prompting and his conviction that this work matters.
Then there was the good fortune of the DRILL research programme. DRILL is unique in that researchers don’t have to be qualified academics (I started out on an academic path at one stage but my chronic illness was too severe for me to continue). It is about privileging lived experience and putting disabled people in control of our own agenda. So I found myself the lucky recipient of a research grant despite having no formal qualifications or research background. And that’s how the project came about.
Q: Why do you think chronically ill people need a manifesto for social change?
A: We can spend a lifetime focusing on our personal search for treatment and recovery. But at some point (about two decades into being ill in my case!) you have to make your peace with your symptoms and focus on living as well as possible as a disabled person.
It can be very difficult to disentangle the illness from the stigma that comes with it… how much negativity there is towards us, how much we have internalised it, and how profoundly it shapes our lives.
That’s not to say that agitating for proper research and treatment isn’t crucial and I salute and support that form of activism wholeheartedly. But for me, it meant tackling the things that reduce my quality of life that are not intrinsic to the illness but come from other people’s reactions and attitudes, and recognising the effect of those attitudes on my morale and self-esteem, and on the goals I set myself.
It can be very difficult to disentangle the illness from the stigma that comes with it. But it makes you realise how much negativity there is towards us, how much we have internalised it, and how profoundly it shapes our lives. That’s why we need to articulate the oppression and restrictions that society imposes on people with chronic illness, and set out our case for social change.
Q: Why do you think the UK specifically needs the Chronic Illness Inclusion Project?
A: As researcher Mo Stewart has elaborated, the ‘welfare reforms’ that have blighted our lives in the UK were founded on a corrupted biopsychosocial model of disability that depicts chronic illness as a lifestyle choice and a cop-out for the morally weak. Alongside people with mental health conditions such as depression, people with chronic physical illness, especially with invisible, fluctuating and medically-contested illness, were singled out for removal of financial support by this redrawing of the disability category. So in a sense, people with a range of chronic illnesses have been thrown together by a common assault on our livelihoods, as well as on our integrity.
There is a need to re-examine our social model of disability and address people with chronic illness being excluded.
In terms of the UK Disabled People’s Movement, the intellectual foundations of the social model of disability involved a rejection of the concept of chronic illness. I don’t think this occurred in other, parallel, disability movements worldwide to the same extent. So there is a need to re-examine our social model of disability and address the loopholes that result – unintentionally in most cases – in people with chronic illness being, or feeling, excluded from the Disabled People’s Movement.
Q: On your site you say the term ‘spoonie’ will never be taken seriously by policy makers – why is that and what’s a better term?
A: Well, spoons, as items of cutlery, bear no relation to units of energy do they?! So as a metaphor, it takes a lot of explaining to the uninitiated and doesn’t pass the elevator test as a communication tool. A lot of people with chronic illness reject the spoonie label, even though they understand its meaning, because they find it infantilising and trivialising.
I think this may be a demographic thing: self-identified ‘spoonies’ tend to be younger, female, and digitally switched-on. We didn’t want to alienate a whole bunch of people by using it. Instead we’ve worked on finding a more neutral term that communicates the most salient feature of chronic illness to policy makers, as well meeting with approval from research participants. ‘Energy impairment’ has proved the most successful term on both fronts.
The term Energy Limiting Chronic Illness leaves us with the acronym ELCI. Could we call ourselves the ‘Elsies’?!
It’s important to me to use the term ‘impairment’ because it is part of the lexicon of the UK disability movement, and conveys that illness is not a state apart from disability. Rather, chronic illness is a subset of disability, or a type of impairment, to use the correct terminology.
And I must credit my former colleague, Jenny Lyus, for the term Energy Limiting Chronic Illness, which we have stuck to throughout our research in order to differentiate spoonies from the broader group of people who have a long-term health conditions that may or may not result in energy impairment. So that leaves us with the acronym ELCI, which is a bit of a mouthful. Could we call ourselves the ELCIs, pronounced ‘Elsies’? Maybe that’s a step too far!
Q: Do you use the term ‘spoonie’/’spoons’ yourself or have you always found these unhelpful?
A: I don’t intentionally seek out other spoonies. But I do use spoon theory as a kind of shorthand when talking with other spoonies with different diagnoses. It refers to that common ground of shared experience and shared values – the stuff that healthy folk don’t get.
Q: You’ve already done some survey work – can you give me any headline results?
A: I’ll tell you the most striking finding of the survey to me. We asked people whose attitudes, from among different groups in society, have the most negative impact on them. Overall, the highest scoring group for their negative attitudes to us was ‘healthcare professionals’, scoring even higher that DWP staff!
And yet, better healthcare was the single most important goal for most participants too. I think a lot of further research is needed to explore those tensions and get to the root of how and why so many of us experience oppression from the clinical encounters that are supposed to benefit us.
Q: Some chronically ill people object to the social model of disability because they just want medical validation and treatment. What’s your understanding of this issue?
A: How long have you got?!
Firstly, the majority of our participants wanted better medical treatment above all other goals. But a majority also agreed that their lives could be much improved if society better understood and took account of their health conditions. So I don’t think there has to be a contradiction between seeking a cure and seeking changes to society’s response to chronic illness. The two goals can be accommodated together.
I think the social model of disability is liberatory and we have all benefited from the rights that grew out of it, starting with the Disability Discrimination Act in 1995, in ways that we now take for granted. What I take the most from the social model is the associated principle of Nothing About Us Without Us. I think that resistance to the idea that professionals know best, that our lived experience counts for nothing, and that, as patients, our duty is as passive, grateful recipients of care is at the heart of being a ‘spoonie warrior’. However, there is a big problem with the social model if you take a fundamentalist approach to it.
The nature of chronic illness is such that often neither the elimination of discrimination nor technological solutions can significantly mitigate the effects of our impairment.
The social model rests on the conceptual separation of ‘impairment’ (the malfunction of body or mind) and ‘disability’ (the social relationship of oppression towards people with impairments). The leading proponents of the DPM like Mike Oliver said that only disability-as-social-oppression was the proper subject of disability activism. The personal, biological fact of impairment and the pain and distress it caused had to be kept private, because to admit that impairment in itself might restrict our lives and be the cause of our disadvantage would dilute and weaken the central proposition of the movement: which is that disability is socially created and that society has to change its ways, not us as disabled people. I get that; but it has several problematic implications for chronic illness.
The nature of impairment with chronic illness is such that, very often, neither the elimination of discrimination nor technological solutions can significantly mitigate the effects of our impairment: profound exhaustion, cognitive fatigue etc, to allow full, or even partial participation in society. Other groups of disabled people are far more successfully included in society through technological, social and political measures than we are. This is nobody’s fault, but the resulting message is that the more severely ill you are, the less the disability rights movement is for you.
Q: And chronically ill people often battle for years before anyone even admits they have impairment, right?
Yes. The proposition that the medical aspect of our lives is a private matter between ourselves and our clinicians and should remain outside the sphere of politics and activism is deeply flawed. For many of us, the clinical arena of diagnosis and treatment, or lack thereof, is our fiercest battleground. Impairment is not a biological given, as the social model proposes, it is socially constructed.
It is socially constructed amid relationships of power where we, the impaired, have little to no claim to authoritative knowledge. We can be dispossessed of our own bodily reality by what I’m calling institutional disbelief. The consequences of this are huge. The social construction of impairment determines whether or not we are entitled to the support and the concessions that a society makes for disabled people. It is the biggest hurdle we have to overcome.
We have to bring the politics of impairment – consideration of who has the power to define and diagnose it – into the sphere of disability activism. Otherwise the social model cannot fully incorporate chronic illness.
Q: Do you think the chronic illness and disability activism communities are fundamentally aligned? What’s the way forward with this?
A: I think we have too much in common with other disabled people to go our own separate way. Despite our government trying to divide us by saying they protect the ‘most severely disabled’ from the interlopers and the fakers, none of us has been spared by austerity. We are all seeing our lives devalued and our rights dispensed with.
We all fundamentally share the same goal: a society that invests in fulfilling our potential and values our lives equally for the contribution we make, whether by investing in the support we need to reach to top of the career ladder, or by conferring dignity and respect on a life spent enduring pain and contemplating the meaning of suffering within the confines of four walls.
The Disabled People’s Movement has to accommodate these tensions and embrace diversity of impairment experience.
Other groups of disabled people also find their own tensions within the social model of disability: the Deaf community, mental health service users, people with learning disability, all take issue with some aspect of the doctrine. The Disabled People’s Movement has to accommodate these tensions and embrace diversity of impairment experience, otherwise it will die.
My big hope is that energy limiting chronic illness (ELSI) will become a constituency of the DPM, like the neurodiversity movement and those I mentioned above. That will require us to come together and organise. This is a challenge because, understandably, where people with chronic illness have the energy for activism, they tend to organise under their own diagnostic label for better research and treatment.
It’s also a challenge because our oppression through institutional disbelief is different to the oppression faced by people with visible and uncontested impairments. Currently, our experience of oppression is not seen through a disability rights lens. It needs to be articulated and translated into the language of the DPM if we are really going to join forces and move forwards together. That, to me, is a huge intellectual and communication challenge!
Q: Do you think the medical model of disability denies chronically ill people equal access to healthcare? If so, why?
A: Yes, I do. The medical model of disease and disability equates seeing and knowing (the great sociologist Michel Foucault originally said this in a book I read 25 years ago as an undergraduate and it has stayed with me ever since!). If biotechnology hasn’t developed a way of seeing pathology, then it doesn’t exist, and if the patient’s report of illness cannot be seen in clinical laboratory findings their perception of their own body must be at fault.
As Maya Dusenbery has brilliantly explained, this leads to a ‘knowledge gap’ and a ‘trust gap’ in medicine that perpetually reinforce each other. Diseases that are not understood are psychologised, which in turn means they end up not being studied by biomedical science, so they remain medically unexplained, and therefore dismissed as psychological.
As we’ve seen with ME and the PACE debacle, there are a great many vested interests that get in the way of healthcare equality.
This is how we’ve ended up with the pernicious diagnosis of Medically Unexplained Symptoms. Far from being a simple admission that that a doctor, or medical science as a whole, doesn’t understand the cause of our symptoms, the MUS label attributes a psychological cause by default, and therefore steers us away from further medical investigation and treatment into the land of CBT, mindfulness, medical neglect and some would say ‘gaslighting’.
Equal access to healthcare is partly about being able to physically access routine healthcare services. But it is also about diseases receiving equal consideration and resources in terms of research and treatment with respect to their impact on quality of life. Once a condition is psychologised, it receives little to no biomedical research funding. As we’ve seen with ME and the PACE debacle, there are a great many vested interests that get in the way of healthcare equality. Healthcare equality is deeply political issue.
Q: What are the Chronic Illness Inclusion Project’s plans for the next year?
A: 2019 is the year we put together our manifesto for energy limiting chronic illness and report on the research that informs it. It is also the year we need to find a way to sustain this work beyond the grant period which ends next December. My chronic illness affects whether this can happen. I’m very limited in what I can do alone. We would need to build a team to take this forward. I honestly don’t know whether people with chronic illness can come together to come together to lead an organisation of and for chronic illness or whether that’s a contradiction in terms. Time will tell!
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