Misrepresentations of Chronic Illness and Disability

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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

22 thoughts on “Misrepresentations of Chronic Illness and Disability”

  1. Ellouise Heather

    A very interesting and well written piece, addressing a very important issue. Not only does this cause a problem when it comes to claiming the benefits you might absolutely need, just to get by, when accommodating the additional needs chronic illness and disability bring, but also the pressure that can come from using physical aids and feeling the need to justify using them; or not using them and feeling obliged to justify why you should be accommodated when they can’t physically see what the problem might be.

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    1. Utting Wolff Post author

      Thanks Ellouise. I feel that people have become more judgemental and even abusive in recent years when it comes to the chronically ill, I didn’t previously feel the need to justify using a wheelchair despite being able to use my legs but I do now, and have indeed had to on occasion. Certain media coverage and the attitude of the government with their ‘scroungers’ rhetoric, hasn’t helped.

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      1. paulwatton2014

        We cannot ignore the influence of the recent world economic crisis in this matter.
        It is Capitalist countries, with highly developed economies, who’s workers tend to enjoy generally higher wages, who have more to lose during a global recession.

        The increased pressures (reducing income, rising costs, workplace stress, poorer terms & conditions, long hours at work etc.) and losses (and perceived risk of potential loss) experienced by the middle and working classes during recession and as a consequence of increasing global competition are a threat to their sense of security. This must surely play a part in why society is now so lacking in compassion.

        History demonstrates that it is at times of greatest economic distress that tolerance of weakness and disability is at it’s lowest.

        Right-wing Governments know this and exploit it for their own ends.

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      2. Utting Wolff Post author

        Hi Paul, Thanks for your comment. It’s certainly the case that intolerance of weakness and disability, or intolerance of the weak and disabled who are receiving state benefits, is at its greatest during times of economic distress. The modern political rhetoric encouraged by the right-wing media, constantly comparing the ‘hard working majority’ with the ‘scroungers’ who supposedly refuse to, after all there’s no can’t work in their world only a refusal to do so, has certainly made things much tougher for the chronically ill. Unfortunately it’s no longer just right-wing governments, as the centre-left seems to have bought into the same paradigm when it comes to treating the sick and disabled, it was Labour that gave us ATOS and their ilk after all (I realise calling the Blair administration centre-left is probably pushing things…).

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  2. Kelly Wichlacz

    I wrote this to encourage support from family and friends by having a better understanding of what life can be like when chronically ill. No one chooses to be sick. No one chooses which illness they get. Being sick and chastised for it , has to stop. Please share in hopes of better understanding.
    My Life as a AA Battery: http://youtu.be/OkslGkwirkA

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    1. Utting Wolff Post author

      Hi Kelly, thanks for the video link, very interesting and informative re your life with fibromyalgia. Being sick and then chastised for it does indeed have to stop. We’ve shared your video on Twitter and would appreciate your doing the same with our blog. Cheers.

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  3. potbatch

    ‘Othering’ is a great word for a ghastly phenomenon which unfortunately seems to be hardwired into human DNA. Even the most well meaning of us seem to have an instinctive need to identify ‘the other’ and label them hostile. Perhaps this was necessary in ages past for our survival in the wild but it’s one of those traits which has lingered on and is now a distinct disadvantage for modern humanity.

    As the othering of numerous groups which were previously seen as ‘fair game’ based upon gender, race, religion and sexuality is now discouraged – and three cheers for that – perhaps it was inevitable that the sick and disabled would be one of the groups wheeled in to fill the gap. Someone had to be ‘other’ so it might as well be us, especially as the government’s austerity rhetoric positively encouraged it.

    So what do we do about it? I agree with you that we need to be vocal: to speak up about how it is to be how we are. We need to tell it like it is with honesty, passion and sometimes, where appropriate, anger, but preferably politely and – in my opinion – also with occasional humour. We need to seize any means at our disposal to spring people out of their ignorance of how we ‘others’ have to live – and to make them realise they could easily be among us.

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    1. Utting Wolff Post author

      Hi Potbatch, thanks for reading and taking the time to comment. I’m afraid the sick and disabled have always been regarded as inferior to varying degrees; they were among the first to disappear into Hitler’s concentration camps to name one of the most horrific examples of persecution. In some countries, until recently, the mentally ill were put into cages and exhibited in market squares. There are some very good overviews of the history of disability and long-term illness; if you are interested, here is one of them (I think it’s apt here as it specifically mentions the problematic of ‘perception’): http://dsq-sds.org/article/view/3197/3068 A good deal of humour is indeed needed to not only survive chronic illness but to live a meaningful life. That would be my answer to your question as to what to do; to realise we (can) live meaningful lives, and that our worth is not determined by people’s or institutions perceptions of us. I also think we need a more structured and organised movement based on the Human Rights Act, in other words, become more political. In the meantime, let’s keep advocating by being ourselves and without putting on shows for what we perceive is the ‘norm’.

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  4. potbatch

    Of course you are right to point out that the sick and disabled have long been ‘othered’ but I suppose I was speaking of my own experience. When I first became ill with ME in the eighties, I did not feel the same level of pressure from society to get my act together and be well. It was there of course but not to the same level it has been since the economic crash. Even Thatcher seemed to recognise that people could become chronically ill – but many now no longer wish to accept that fact. When people looked for someone to blame for the crash, they seized on the bankers, but the sick and disabled have proved an easier target to punish.

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    1. Utting Wolff Post author

      You are right, on a personal level it does feel much, much worse to be (chronically) ill today than it was in the 80s. Extreme neoliberalism has not done society any favours. The insults, unwillingness to listen and learn, the crass lack of respect for human life, sick or not, are very hard to endure sometimes, I completely understand and I do agree that the sick and disabled seem to be the scapegoats for everything that is wrong with society. Our punitive ‘welfare’ system and how even old friends and family members talk to us on occasion all indicate a contempt for people who have a less than perfect immune system. I am so sorry you experience the same.

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    1. Utting Wolff Post author

      Thank you, Carole. I wish I could tour the country and give talks on this, in the bedrooms of the chronically ill or via Skype. There is a huge need for learning about the context of chronic illness. I am convinced that if people knew more about the political, historical and culture background even those who think they are the norm (‘the hardworking taxpayers’) would finally stop buying into cheap rhetoric and instead demand change. In 2001, a conference took place in Woodstock near Oxford. The name of the conference: ”Malingering and Illness Deception.” Have you heard of that? I will make certain to discuss the aspects of orchestrated efforts at state level, aided by a handful of academic, overzealous theorists, to discredit the sick and disabled wide and far, starting in my next blog post. Thanks so much for re-blogging and reading.

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  6. pussycats3

    You covered the issue of what is the norm vs chronic ill and disabled very well; however, it was not an easy read. Having said that, you have made an excellent point. There is difficulty in how the chronic ill and disabled are represented to “normal” people. Some disabilities are not visible, as in M.E. I believe those patients who have an “invisible” illness have a more difficult time of it to convince others that they indeed have a disabling illness, especially if they are not that ill at the time, to require a wheelchair to attain mobility. I don’t know how we would get the message to be taken seriously by those who are considered “normal.” It is quite the difficult task, as you have pointed out. BTW, please see my other blog (Sunshinebright) at http://sunshinebrightblog.wordpress.com where I have my “ME Advocacy” archive as well as others.

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  9. ~SerendipityCat~

    Thank you for this excellent piece!

    I also perceive the struggle of the chronically ill and disabled to be made worse by the individualistic zeitgeist; the overabundance of “coaches” and motivational speakers, the self-help literature and extreme focus on the individual and “finding your inner strength” to overcome obstacles. There is a form of non-willingness to accept that everybody could be the subject of a terrible disease or an accident leaving them disabled and in need of help.

    To keep up the false idea that “everything is possible” for the one who wants it enough and works hard to get it, many with a healthy body refuses to even see the struggle of the chronically ill. It would remind them too much of their own mortality and that their own success is just as much attributed to luck and social circumstances, not just their own effort as they are prone to believe and lecture others about.

    The result then is a move away from a collectivistic mindset where taking care of everybody in your clan, society, family as a natural way, towards leaving those with a “problem” – those gross, non-functioning, probably lazy fakers – to “fend for themselves”.

    And as a sociologist this really scares me.

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  11. octoberpoppy

    Fascinating post Claudia. I’ve had the same thoughts about the Little Britain sketch of the “fake” wheelchair user. Also, more recently, and more disturbingly, there was an incidence of mockery of non-paralysed wheelchair users on the C4 Paralympics show hosted by disabled commentators! I forget his name – Andy or Alex – but he’s very high profile. It was paralympics wheelchair fencing. Some of the athletes were not paralysed so got up to walk out their wheelchair after their round, which the commentators found hilarious a la Little Britain.
    There is so much food for thought here. Thank you for writing.

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    1. Utting Wolff Post author

      The incident you mention occurred on The Last Leg when the wheelchair/fencing comment was made, which was cringe worthy and offensive, and I stopped watching the show from then on (having found them to be far too much on the chauvinistic side for some time, too). I did write this blog post in dialogue with yours, Catherine, it is dated January 2015, so not a new one. I have been working my way through my publications, both on the blog and elsewhere, and am trying to figure out what to do with them to further debate and learning in informal settings. Lately, there have been quite a few articles by others that seem to repeat, over and over, what has already been said instead of engaging in dialogue (I often write blog posts in response to something and in hopes something more will emerge when engaging with others). I find monologues rarely conducive to change. Your blog post was/is excellent and it deserved further, and much, wider, debate. We need to evolve, not regress but the latter is what I currently see, I’m afraid. I hope you have noticed your blog post was reference number 1, admittedly due to a chronological order, but still. 🙂

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