There has been some discussion among sufferers of chronic illness and disability as to the usefulness of theoretical or conceptual models (social, biomedical, etc) to explain the complexity of disability and chronic illness. A concern raised in the past few days, following a blog post that addressed the social model [1], was that no theoretical model could fairly represent the circumstances in which chronically ill people find themselves. Two points regarding this:

1) When we deviate from norms we will invariably be subjected to all manner of analyses that explain through some lens why we no longer form part of the norm. People have always been interested in learning more about difference, and unfortunately that learning often involves (initial) stages of turning those who are ‘different’ into the ‘Other’. It is called ‘othering’ and the more extreme forms of othering range from character assassination and ridiculing, to hate crime. All of which are fuelled partly by misrepresentations of the chronically ill and disabled, and there are many examples of such misrepresentations. For example, Little Britain where Andy hops out of his wheelchair and runs about behind his carer’s back*, images and discourses along the lines of ‘benefit scrounging scum’ in mainstream media of people on benefits sunbathing all year long on the Costa del Sol at the ‘hardworking taxpayer’s’ expense, to hate crimes[2]. There are other images, too, that trivialise certain illnesses such as myalgic encephalomyelitis. Not many ME sufferers will be able to identify with the almost inevitable picture of a sexy young model with picturesquely downcast, perfectly made up eyes, her pretty head supported by her two elegantly manicured hands looking a tad fatigued as she has a little moment of respite at her shiny expensive (office) desk.

In short, the consequences of such ‘othering’ by misrepresentation always involve exclusion of what is the accepted norm, and all forms of exclusion will have serious consequences for ‘The Other’, and for society as a whole eventually.

2) The social model has evolved as a necessity to counter misrepresentation by the medical model[3,4]. It is a theoretical model that has roots in disability activism and as such is praiseworthy. It is also a useful model to render visible a perspective that was entirely missing from the medical model: society is dis-abling for people with chronic illnesses or disabilities or both. Many societal functions are offered on the assumption that those participating in society are healthy, which is of course not the case. The ways in which people are not healthy and do not conform with societal norms vary over time. Activists and researchers have their preferred lens through which to understand the phenomena of their particular time in order to arrive at analyses whose purpose is to contribute to change for the better (less exclusion or no exclusion at all). The social model offers much in terms of understanding how the sick and disabled are forced into the margins of society.

The problem with activism and theories is that they are not synonymous. Models should not simply be applied to whoever, whenever, contributing to further exclusion rather than being utilized as analytical tools with which to pick apart the complexities of life with chronic illness. Theoretical models cannot be used to tell one individual person what they are like and what their needs are: it is justified for individuals to protest against theoretical misrepresentations through hypothetical models especially when the latter are poorly understood by those who apply them.

I would like to recommend other ways in which meaning, through theoretical analysis and taking action for change in real life, can be found.

• The work of countering misrepresentations of chronic illness and disability needs to continue, ideally more vocally than ever. There is strength in numbers. The more people with chronic illnesses and disabilities who dare to speak out in public, either online or out on the streets, at the workplace etc., the greater the effect regarding rectification of misrepresentation. We should not treat our disabilities according to the perceived norm e.g. someone using a wheelchair must be paralysed, rather than too ill to walk. The more people using wheelchairs as an energy saving mode of transport the better for the public’s perception of ‘who’ a person using a wheelchair is. Being the object of raised eyebrows and/or scorn is unpleasant but it will become even less pleasant if we comply by internalising those raised eyebrows and scorn. We have already paid a high price for an ‘offence’ we have not caused, by falling ill or being born without the normatively expected healthy, functioning body.

• Healthy people need to ‘learn’ some humility and gratitude regarding the sick and disabled. This is not intended to sound like a lecture, it is intended to convey a serious concern I have about accommodating healthy people’s notions and prejudice of what disability is and how a chronically ill person is supposed to be and act. If we remain in the aforementioned wheelchair, rather than showing our capacity to walk a few steps, for fear of being misunderstood as benefit scroungers, we confirm those notions and prejudices rather than challenge them. We need to give healthy people opportunities for learning about our realities instead of fuelling semi-truths and confirming images of the compliant cripple with no place in society. If a healthy person does not know about our circumstances, no learning can take place, the absence of learning means the absence of knowledge and well-informed reactions and actions towards and for the ill and disabled, and it certainly means continued absence of humility and respect for circumstances that are outside the norm. Another aspect is that no matter how much we try to accommodate and be conformist we cannot ‘win’ as we still won’t be accepted and we will still be limited in various ways, seen through the lens of a healthy, fully functioning person. Most of us have tried and failed, some quite miserably, while others keep trying at often huge personal expense.

• Here are some thoughts on definitions of disability. It has been suggested, by researchers including Ron Amundson[5] that societies are constructed with the biomedical norm of humanity in mind. Susan Wendell’s reflections on this are more radical ”I am unwilling to accept that (society) was constructed for any norm. I think it was constructed for the young, non-disabled male paradigm of humanity”[6]. She bases this reflection on observations of the systemic disadvantages the sick, elderly, disabled, young mothers and children find themselves at in society. If this is the paradigm in which we operate, there are good reasons to work for a paradigm shift towards a more inclusive one. The norm may not be ‘the healthy’; the norm may be a more exclusive place, making the likelihood for change less Utopian and remote than it may seem currently.

• Regarding our own identity, we need to ask ourselves if we want to be labelled as disabled or if we think it is useful to consider ourselves disabled. I believe the latter is the more empowering choice. We cannot choose how others label us, they shall do so whether we like it or not. However, by choosing to identify ourselves as disabled, chronically ill, etc., we can contribute to and proactively form definitions of disability and chronic illness, instead of being told by others, through raised eyebrows, ridicule, and injustices inflicted upon us, what and who we are and what we can and cannot do.

Being chronically ill and disabled is hard, yet here we are. It is an infinite, informal course in lifelong learning we did not voluntarily enrol on yet must endure. I embrace the multi-faceted knowledge and insights from the many sufferers I have had the pleasure, sometimes displeasure but that is part of learning too, to encounter. The only way forward involves actively listening to the experiences of others, collecting background facts, understanding the context, reflecting on ways in which to be part of the change we need, and taking well-informed action with a preparedness to critically evaluate. I hope for a continuing discussion of the usefulness of theoretical models and the practicalities of activism. I also hope for tolerance, especially in times when there is so little of it. Most of all, I hope for sustainable change towards a more inclusionary society in which the chronically ill and disabled no longer feel they need to apologise for an offence they did not commit.

Thank you for reading.

*I believe significant damage was caused concerning how the chronically ill are perceived by the UK public, due to Little Britain’s Lou and Andy Sketch.

1) http://limitedcapability.blogspot.co.uk/2015/01/sickness-and-social-model-of-disability.html?m=1 (accessed 29/01/2015)

2) Katharine Quaramby (2011). Scapegoat, Why We Are Failing Disabled People

3) Shakespeare (2006). Disability Rights and Wrongs, London: Routledge;

4) Hughes (2009). Disability activisms: Social model stalwarts and biological citizens. Disability and Society, 24, 6, pp 677 -688

5) Amundsen (1992). Disability, Handicap, and Environment. Journal of Social Philosophy 23 (1) pp 105 – 18

6) Wendell (1996). The Rejected Body: Feminist Philosophical Reflections on Disability, pp 182