Video: Chronic illness and the social model of disability - Leonora Gunn

[Andy]

Many people with chronic illnesses struggle to see the relevance of the social model of disability to their situation. In this video, Leonora (Leo) Gunn explains the power and history of the social model and its continued importance in liberating disabled people from social oppression. She also argues that proponents of the social model within the UK Disabled People’s Movement need to understand chronic illness to make sense of why our struggles to validate our impairments and fight for effective treatments are political acts, not simply succumbing to pity and tragedy. This video was originally part of a longer, informal meeting, which participants engaged in from home.

Leo is a Deputy Chair of Leeds Disabled People’s Organisation, a Project Advisory Board member of the Chronic Illness Inclusion Project, and is doing a PhD at the University of Leeds, focused on the philosophy of disability and the social model.

https://youtu.be/fjWjb41bEOI

 

[alktipping]

hasn't the social model of disability been used by the insurance industry and benefits agencies around the world to browbeat the sick and disabled into employment regardless of the individuals abilities . i think people in positions of power use examples of high achieving disabled people to project employment as being good for everyone whilst not understanding many chronic illnesses will deteriorate when people are pushed beyond their limitations .

 

[Kitty]

hasn't the social model of disability been used by the insurance industry and benefits agencies around the world to browbeat the sick and disabled into employment regardless of the individuals abilities . i think people in positions of power use examples of high achieving disabled people to project employment as being good for everyone whilst not understanding many chronic illnesses will deteriorate when people are pushed beyond their limitations .

I think the point of the Chronic Illness Inclusion Project (Leo's on their board) was that the social model can exclude chronically ill people. It's certainly something I've felt keenly over the years, as I've worked with a lot of Deaf and disabled artists; even though I had no fixed impairments, I was in some respects more disabled than my colleagues. The disability arts movement is intensely social, but there was no way I could take part in any of it beyond the end of the working day.

At times, I felt like a failure as a disabled person because I didn't have any bits missing, but a failure as a non-disabled person too. This wasn't imposed on me by friends and colleagues, it was just that none of them had an energy impairment (and some of them were/are such joyous nutjobs that they seemed to have twice as much energy as everyone else!).

So yes, this issue of inclusion is part of what underlies the original project. I think it's now come to the end of its funding, and some of those involved are now working on related projects such as Catherine Hale's work the Commission on Social Security (Experts by Experience).

 

[Trish]

I hesitate to describe myself as disabled. I prefer to describe myself as having a disabling chronic illness.

 

[Milo]

I hesitate to describe myself as disabled. I prefer to describe myself as having a disabling chronic illness.

i wish we could remove the ‘chronic illness’ status by actually finding what the heck is wrong with us, and how to make it go away.

 

[Kitty]

I hesitate to describe myself as disabled. I prefer to describe myself as having a disabling chronic illness.

It's absolutely your choice; 'disabled' is, and has to be, a self-definition.

When I was first diagnosed, 21 years after becoming ill, I found it enormously enabling in strategies such as not making unfeasible demands on myself, asking for reasonable adjustments, understanding that a powerchair would help me stay in work (which it did, for 15 years), and applying for Disability Living Allowance to fund it.

It's also part of a person's political identity, of course, and the conversations, reading, and debates it prompted were among the most enlightening and enabling aspects of it.

 

[Kitty]

I've just remembered that there's a good report on the Centre for Welfare Reform website, which specifically examines energy impairment in relation to the Social Model. It's quite long, but there is an executive summary too.

If anyone is interested, it's here:

https://www.centreforwelfarereform.org/library/energy-impairment-disability-inclusion.html

 

[Tia]

I'm happy to identify as disabled although I usually add 'and chronically ill' because it gives more info - lots of disabled people aren't ill.

I'm really interested in disability theory. I've just read an article by Tom Shakespeare (a rockstar in the disability studies arena it seems and deservedly so) and Nicholas Watson about moving from a social model theory to a theory of embodiment. The article is called 'The social model of disability: an outdated ideology?' and can be found here: https://www.um.es/discatif/PROYECTO_DISCATIF/Textos_discapacidad/00_Shakespeare2.pdf

It was written in 2002 and I'm wondering if this model of embodiment ever took off or what became of it. Does anyone know? Can anyone recommend any further reading? It seems to make sense to me.

A quotes from the piece:

"As grounding for this social theory, we want to suggest an alternative ontology of disability, which has implications not just for disability studies, but for the broader ways in which sociologist and philosophers conceive of the body. Writers on both sides of the Atlantic have proposed that it is most meaningful to consider that everyone is impaired. For example, we cite the work of Irving Zola (1989), or Allan Sutherland’s suggestion that:

'A more radical approach is needed: we must demolish the false dividing line between 'normal' and 'disabled' [meaning impaired] and attack the whole concept of physical normality. We have to recognise that disablement [impairment] is not merely the physical state of a small minority of people. It is the normal condition of humanity.' (Sutherland, 1981, 18, italics in original).

No one’s body works perfectly, or consistently, or eternally. We are all in some way impaired. Illness, as Antonovsky (1979) argues, is the human condition. Mortality, as Bauman (1992) has written, is the inescapable essence of being alive. These central truths are obscured within the Western tradition of mind/body dualism: since the Enlightenment, humans have been defined in terms of their rational capacities, that is, what separates us from animals, rather than the physical nature which connects to animals. Only minority voices such as Sebastiano Timpanaro (1975) have reminded us of the inherent frailty and vulnerability of our embodiment. Acceptance of the ubiquity of impairment and physical limitation offers a different definitional strategy for disability studies."

 

[Kitty]

I've just read an article by Tom Shakespeare (a rockstar in the disability studies arena it seems and deservedly so) and Nicholas Watson about moving from a social model theory to a theory of embodiment.

I have a lot of time for his work; others contest it, some strongly. But in my experience, it's open debate rather than personal attacks, which is absolutely the way it should be approached!

 

[Tia]

Oh interesting. Is Tom Shakespeare still of the view that the social model was useful but needs updating? What are the counter arguments? I guess those who think that the social model must remain central? Or is that a huge simplification?

I'm trying to get my head around different theories. I've studied critical theory but never read anything about disability until recently. I want to understand more but don't know where to start.

 

[Kitty]

Is Tom Shakespeare still of the view that the social model was useful but needs updating? What are the counter arguments? I guess those who think that the social model must remain central? Or is that a huge simplification?

I haven't had any debates about it for a looong time, in truth. I became too unwell to carry on working in the disability arts sector in 2013, and since then all my conversations have been with people inside the chronic illness community. I can't even read books now, so I don't know what's happened as regards Tom Shakespeare's work.

This is why I was interested in the Chronic Illness Inclusion Project, the work that Leo Gunn is doing, and the report in the link above, though. They seem to be making real advances in pushing the debate forward – at least according to what I can grasp from my pathetic three-paragraphs-a-day reading ability!

 

[Hoopoe]

There is some truth to the idea that society's response to disability can make things much worse but in the context of something like ME it's ridiculous to suggest that this a bigger factor than the illness itself.

That's in response to the general idea of a social model of disability. It might be accurate for some disabilities but not all.

 

[Tia]

I haven't had any debates about it for a looong time, in truth. I became too unwell to carry on working in the disability arts sector in 2013, and since then all my conversations have been with people inside the chronic illness community. I can't even read books now, so I don't know what's happened as regards Tom Shakespeare's work.

This is why I was interested in the Chronic Illness Inclusion Project, the work that Leo Gunn is doing, and the report in the link above, though. They seem to be making real advances in pushing the debate forward – at least according to what I can grasp from my pathetic three-paragraphs-a-day reading ability!

Thank you. I am a terribly slow reader too. I mostly listen to audio books but do manage a few bits. I printed that Tom Shakespeare essay out and read it in parts over a week. The length of the energy impairment report from the chronic illness inclusion project intimidated me but perhaps I will have a go at reading it in bits. It does sound very interesting!

 

[Kitty]

This is the core of what the report discusses. I have split the first paragraph into three, in the hope of making it easier to read, and explained a couple of sets of initials – I hope that's helpful.


"Chronic illness and the DPM [Disabled People's Movement]

Investigating a social model of disability in relation to the experience of chronic illness lays bare certain tensions and challenges. The concept of chronic illness is largely absent from both Disability Studies and disability activism in the UK. This occurred as ‘chronic illness’ became associated with an oppressive, medical model of disability. Indeed, many feel that chronic illness and the social model of disability are conceptually incompatible.

On the one hand, some in the DPM think people with chronic illness focus too much on impairment – on restriction, suffering and the pursuit of medical intervention – and see this as a betrayal of the social model of disability.

On the other hand, people with chronic illness think the social model does not apply to them because addressing external barriers and discriminatory attitudes doesn’t mitigate the impact of chronic illness enough to allow for social participation and inclusion. Thus, chronic illness and disability have been conceived of as different states.

We feel that these conceptual tensions create an impasse that prevents people with chronic illness from identifying and challenging the social and structural causes of our disadvantage. This makes it harder to claim our rights as disabled people. The aim of the CIIP [Chronic Illness Inclusion Project] was to explore whether and how the social model could be harnessed productively to support our own emancipation as disabled people."


Inevitably, it finds that some of the disability experienced by chronically ill people IS imposed on them socially – by disbelief, by a refusal to understand their experience ('Everyone gets tired'), by the attitude that chronically ill people don't deserve the definition 'disabled', by medical gaslighting, by a benefits system that constantly suggests they might be under surveillance for faking, etc. If we are to claim our rights and counter our exclusion, we have to challenge this.

 

[Tia]

This is the core of what the report discusses. I have split the first paragraph into three, in the hope of making it easier to read, and explained a couple of sets of initials – I hope that's helpful.


"Chronic illness and the DPM [Disabled People's Movement]

Investigating a social model of disability in relation to the experience of chronic illness lays bare certain tensions and challenges. The concept of chronic illness is largely absent from both Disability Studies and disability activism in the UK. This occurred as ‘chronic illness’ became associated with an oppressive, medical model of disability. Indeed, many feel that chronic illness and the social model of disability are conceptually incompatible.

On the one hand, some in the DPM think people with chronic illness focus too much on impairment – on restriction, suffering and the pursuit of medical intervention – and see this as a betrayal of the social model of disability.

On the other hand, people with chronic illness think the social model does not apply to them because addressing external barriers and discriminatory attitudes doesn’t mitigate the impact of chronic illness enough to allow for social participation and inclusion. Thus, chronic illness and disability have been conceived of as different states.

We feel that these conceptual tensions create an impasse that prevents people with chronic illness from identifying and challenging the social and structural causes of our disadvantage. This makes it harder to claim our rights as disabled people. The aim of the CIIP [Chronic Illness Inclusion Project] was to explore whether and how the social model could be harnessed productively to support our own emancipation as disabled people."


Inevitably, it finds that some of the disability experienced by chronically ill people IS imposed on them socially – by disbelief, by a refusal to understand their experience ('Everyone gets tired'), by the attitude that chronically ill people don't deserve the definition 'disabled', by medical gaslighting, by a benefits system that constantly suggests they might be under surveillance for faking, etc. If we are to claim our rights and counter our exclusion, we have to challenge this.

Oh brilliant! Thanks so much for that. This is such an important debate I think. It really helps me to have things theorised in this way. I definitely feel that the social model has something to offer us - if society was set up to include us, we might not be 'healthy' but we could have a better standard of living. I'm really glad to discover the Chronic Illness Inclusion Project.

(Btw, Splitting a paragraph up really does make it easier to read doesn't it?!)

 

[Kitty]

I definitely feel that the social model has something to offer us - if society was set up to include us, we might not be 'healthy' but we could have a better standard of living.

Absolutely – one of the biggest social barriers for some chronically ill people is work.

I wonder what percentage of people with energy impairments could do some work, if it were made accessible enough and the benefits system didn't punish them for trying? And how that would impact their self confidence, their sense of achievement and satisfaction, their financial wellbeing, their relationships, their overall mental health, and the way other people view them?

The same goes for further and higher education, which some people could access on a part time basis already if they weren't terrified their benefits would be cut.

Removing the socially-imposed barriers we face wouldn't solve our impairments in energy and wellness, but nor does it remove the fixed impairments of the folk who've traditionally participated in the disabled people's movement. I've always thought there could be more conversation about the fact that some have 'medical' impairments too, such as ongoing pain or energy issues. For instance, trying to control muscles affected by cerebral palsy can be bloody exhausting as well as painful; and no matter how good their interpreters, Deaf people can often only take part in meetings for so long before they need a rest from the intense concentration.

I don't think we're actually as far apart as it might appear at first glance...

 

[Peter T]

Is a problem with the historic debate between the medical illness model and the social model of an external imposition of handicaps that we do not fit neatly into either, or rather we fit into both?

ME is both an ongoing active illness that requires medical treatment and active rehabilitation, though we lack any adequate evidence based treatments or rehab methods, and also in the absence of any ‘cure’ it is an ongoing disability, albeit a potentially very variable one.

The social model of disability in its current form works best with stable or predictable conditions. This model grew up in part to the inappropriate over medicalisation of relatively stable conditions such as hearing impairment or cerebral palsy. Though we do not fit neatly into this because we continue to feel ‘ill’ it still raises important issues for us around benefits, appropriate support and access issues.

Many years ago I undertook work on the ideas of communication disability and equal communication opportunities with very mixed groups: people with congenital issues (eg cerebral palsy), people with acquired conditions (eg stroke) and people with no disability or underlying medical condition at all. It was interesting that the very different medical and political awarenesses and very different life expectations resulted in a much more productive and nuanced outcomes. One group went on to advise social service planners in their region on service development, an other group went on to provide communication training in their city for all local authority staff working with adults with physical disability.

I think the tensions between medical models and social models of disability in describing the experiences of people with ME are not reasons to throw out the baby with the bath water by dismissing out of hand one or the other, but rather should serve as an impetus for us to look for more nuanced understanding.

 

[Kitty]

Is a problem with the historic debate between the medical illness model and the social model of an external imposition of handicaps that we do not fit neatly into either, or rather we fit into both?

Yes, I think that is what's perceived, but I argue that this separation between the chronically ill and 'stable & predictable' groups is to some extent a false dichotomy.

The resistance of the latter to the medicalisation of their impairments was born out of decades of exclusion, denial, and refusal to engage with the removal of socially-imposed barriers. It's not surprising people want to keep hold of the ground they've gained; it was very, very hard won.

But to say that there is no valid medical or embodied model of disability that can be applied to any of them isn't entirely truthful. Perhaps it's the word 'illness' that's the main problem, because clearly that isn't accurate. But if we look at what the word encompasses when we're talking about chronic illness – pain, energy limitations, mobility impairment, cognitive dysfunction, sensory issues, digestive problems, dietary restrictions, communication challenges, care needs, and the requirement for reduced activity and increased rest – there's a major shift in meaning. Many with fixed impairments could tick some of those boxes.

 

[Peter T]

Yes, I think that is what's perceived, but I argue that this separation between the chronically ill and 'stable & predictable' groups is to some extent a false dichotomy.

The resistance of the latter to the medicalisation of their impairments was born out of decades of exclusion, denial, and refusal to engage with the removal of socially-imposed barriers. It's not surprising people want to keep hold of the ground they've gained; it was very, very hard won.

But to say that there is no valid medical or embodied model of disability that can be applied to any of them isn't entirely truthful. Perhaps it's the word 'illness' that's the main problem, because clearly that isn't accurate. But if we look at what the word encompasses when we're talking about chronic illness – pain, energy limitations, mobility impairment, cognitive dysfunction, sensory issues, digestive problems, dietary restrictions, communication challenges, care needs, and the requirement for reduced activity and increased rest – there's a major shift in meaning. Many with fixed impairments could tick some of those boxes.

Here, here.