It’s not ME, it’s you – can the chronically ill embrace the social model?

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?

Well, it’s worth knowing that the social model wasn’t really created with chronically ill people in mind. The creators of the social model were ‘visibly disabled’ – people with sensory or mobility impairments. Having a visible impairment often means being pitied, and assumed to be helpless. Visibly impaired people can be going about their day normally, and someone will patronisingly tell them that they’re being ‘inspiring’, because it’s assumed that they must always be struggling with everything. For as long as they are seen only as tragic sufferers, their social exclusion and oppression are seen as inevitable.

"Hidden illness": photo of a duvet and pillow with just one arm emerged from underneath it
© Elizabeth Lies/Unsplash

On the other hand, my chronic illnesses are invisible, which means they often aren’t taken seriously by others. It’s assumed that we’re lazy, that we should be able to pull ourselves together. So we are often fighting a desperate battle to make people recognise our struggles to do everyday things. The same narrative that is so oppressive for visibly disabled people can be liberating for the invisibly chronically ill.

In spite of this, I still embrace the social model. I don’t think that this means rejecting the reality of my impairment, nor does it mean that I should reject all medical treatment or research into ME: all the social model asks us to do is to address the socially caused problems that we face on top of our impairments, and surely we can all think of plenty of these! Often public transport doesn’t have enough seating for those of us who can’t stand, those of us with little energy can have to struggle up stairs when there are no lifts, bright artificial lighting can be extremely painful for many of us, and just think of how many public places don’t provide places for people to sit and rest. Let alone how impossible it can be to get employers to make adjustments – many of us could work, and want to, but need to work part time, or need more ‘sick days’ to take off when we hit a bad patch. There are many, many ways that society is constructed only for the able-bodied, ignoring those of us who aren’t able-bodied, but who have every right to be a part of society too.

In fact, even the way that our illnesses are disbelieved could be understood as ‘disabling’ on the social model – it’s something that excludes and isolates us that is unnecessarily imposed on us on top of our impairments! In order to get the help and support that we need to live, we have to put on a performance of misery. If we look too happy, then we can’t be ill, we must be pretending. This isn’t a necessary part of our chronic illnesses, and think how much better our lives would be without it! Having to seem miserable, even when we’re having a good day, makes our lives much more miserable than necessary.

Maybe we all agree that our lives would obviously be better if we didn’t have chronic illnesses, and this might divide us from many disabled people, who may think that, at bottom, they are just different, and they don’t want to be cured. But whether we would really prefer not to have our impairments or not, we can still embrace the social model.

All the social model does is encourage us to point to aspects of our struggles that aren’t only the result of our impairments, and to demand to have them changed. We don’t just have to wait for medical advances for our lives to get better, because a lot of what makes our lives bad are things that society does to us. The onus shouldn’t always be on us to be ‘fixed’. Society needs fixing too. Surely this is a message we can all embrace.

by Leonora Gunn – guest edited by Fran Halsall.

Leonora is an MA Philosophy student at the University of Leeds, with a particular interest in the philosophy of disability and the social model. She is engaged in disability activism, and is currently involved with other disabled activists in creating a pan-impairment Disabled People’s Organisation in Leeds.

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This Post Has 13 Comments

  1. Social model says we are disabled by society not by our bodies. It also makes a firm distinction between impairment (medical) and disability (social). Yet people with chronic illness surely are saying that health conditions can be disabling in themselves, regardless of barriers and oppression. There seems often to be a false dichotomy between ‘social model’ and ‘medical model’ or between impairment and disability. The situation is more complicated and multi-factorial than that. Evidence suggests that people face a range of difficulties, some originating in their health condition, some originating in social barriers, attitudes and oppression, and some of a psychological nature. This appears to be the understanding of disability that most people have.

    1. Is your view that the pendulum swung too dramatically from the Medical Model to the Social Model and a more realistic understanding of disability/impairment lies somewhere in between?

  2. I welcome this debate and and this new formation, i have felt for some time while there are many commonalities with disability there are differences: the social model cannot mean anything if you are in bed and even the weight of a duvet can be unbearable(25% M.E Group). The disability movement was also often not very inclusive to sick people, i can recall one activist suggesting that ‘trying to get better is not productive, just accept your condition” Access, and indeed, work, is often not a priority for many C/I people(though of course it can be) but if you say, have cluster migraines most days then i suggest just surviving through the day becomes the priority. Then, of course, the benefit system generally takes no cognisance of sickness, etc and the majority of its questions are about functionality, it is also frequently conditions like fibro, or Mental Health who seem to be the key targets for the DWP to cut benefits, though again, the list of disabled people no longer with us(see Craig’s list), shows it is everyone.

    i w0uld like to write more, explore nuances, but can’t, but would just say the above doesn’t mean we can’t work with our brothers and sisters in the disability movement, just like in the LGBT world, there are nuances, different perspectives., etc.

    1. Have you come across ideas to do with disability being embodied?

  3. as a philosophy student, you are probably aware of the motte-and-bailey argument?

    the idea is that you [the users of the argument, not you the philosopher who wrote this article] say “all we are saying is X”, but in practice, you are saying much more. in fact, in practice, you are often saying /your version of the very thing that is in dispute/.

    so this type of argument can be a rhetorical trick that smuggles your point of view into an innocent-sounding claim.

    of course, i am not accusing you personally of this. but i am saying beware. i hope you understand. as you are a philosophy student, i have confidence that you are comfortable with subtlety and will not misperceive it as an attack on you.

    you said, “all the social model asks us to do is to address the socially caused problems that we face on top of our impairments”.

    this might be technically true, if we ignore the word “all”. [i also have issues with “impairment” here, which in practice can dangerously downplay or even ignore progressive diseases, but i will ignore that for now to concentrate on “all”.]

    but the social model has been contrasted with the disease model, at least according to wikipedia [admittedly not a good source]. this clashes with what people with m.e. and similarly misopathized diseases face every day from society.

    they face everything anybody in a wheelchair face [after all, many of the milder pwme are in wheelchairs] but much, much more on top of it.

    even worse, back to the word “all”. that is /not/ all that is being said. if it were all that were being said, there would not be a problem with it.

    what is being said, implicitly in policy, is that people with chronic diseases do not need, want, or deserve biomedical research to stop them from dying.

    nobody says that explicitly. but policy gets made based on voices. and when voices are saying “we don’t want the disease model, we want the social model”, this can make for anti-science policy. [and token, insufficient efforts at improving society. yay :[.]

    m.e. needs fixing, as you point out. and that gets downplayed. usually ignored.

    whenever the disability community fails to acknowledge this because it fears losing the social model, it persecutes people with many diseases further — its own comrades.

    don’t get me wrong. i do understand the value of the social model.

    pwme and pw misopathized diseases NEED acceptance and services and to be treated as human beings. just as much as every other pwd.

    when you are able to be out and about, the limitations society places on you might even seem to be your primary concern. many have expressed this.

    such a person with m.e. [for example] can sympathize with the social model strongly. i understand this.

    it is certainty true that society has to change. it HAS TO. you will never get disagreement there.

    however, did you know that you can be out and about today, but bedridden for the rest of your life tomorrow, with no ability to open the shades or have the light on or have people in your room without serious consequences?

    many people do not know that.

    many pwme started out mild, and then became severe, and then died young. emily collingridge is one of them.


    to understand the harm that the social model can cause in practice, please:

    consider the case of whitney dafoe. i use him as an example because he is well known and has been used as an example by the scientist ron davis, his father.

    he needs services — yes, the social model applies there. he needs people to cook and clean for him. he needs medical attention 24/7. he needs people to put food in his tube.

    you can see that the social model works great there, because he needs those things and those things are not provided in the usa.

    yay for social model….

    ..but that is not ALL [there is that word again] that is typically being claimed with the social model in practice.

    what is often being claimed is that society needs to be changed to include pwd, then they then can live more fulfilled lives. often, it is claimed that then people can work, fall in love, have a family, and so on.

    before he can even think about that, whitney needs biomedical research. he has written, using scrabble tiles, that he is dying.

    this /is/, truly, downplayed by the social model in practice.

    it is as if whitney does not exist. i have a problem with that.

    the fact that it is being downplayed is also being downplayed. further persecution for a population already persecuted.

    in my opinion, the use of motte-and-bailey — and i am certain that this is done innocently — to claim that harm is not being downplayed threatens to destroy the unity of the disabled community.

    again, i don’t think this is your intent whatsoever. but it is what does occur in the defense of the social model for /all/ pwd.

    not everybody is a round peg and not everybody wants to be shoved into a square hole.

    as ben franklin said, we hang together or we hang separately.

    many pwme and pwmd [misopathized diseases] feel that the social model is hanging them. and they are right to feel that way.

    many feel alienated /completely/ by the disability movement. is that really ok to allow? shouldn’t we include more people? and make them feel welcome?

    there are bright shining exceptions to this. cwr is one of them. it understands pace, and it goes into depth into the politics.

    but please let’s not pretend that the social model cannot do profound harm in practice.

    this is a crisis moment. people with misopathized chronic diseases that are harmed by the social model must get included /for real/ — not just by lip service and convenient “all we are saying is X” arguments that are absolutely not true in practice.

    it’s a harsh truth. i know the degree to which people want the social model. i sympathize.

    i want society to change every bit as much. EVERY BIT.

    but is it really ok to gloss over the very real and actualized risks of the social model just because it is good for some?

    1. Would you be interested in writing a post about this Samuel? We’re exploring different perspectives on the Social Model and chronic illness with these posts (philosophy terms might require more unpacking and examples for readers).

    2. What Sam said. The psychosocial model has done immeasurable and sometimes irreparable harm to the ME community in the UK and elsewhere. The medical model has been downplayed, dismissed, ignored, denied by many in the medical profession for too long. When they don’t have answers, the fallback position is: “It’s all in your head”.
      Of course, the social model is important and I welcome discussions of this nature. It has an important role regarding quality of life and educating authorities and the public, about unseen illnesses/disabling illness in particular.
      Personally, I would like to see more focus on research and education for medical personnel, some of whom have very little knowledge of ME. I read a report on myself not long ago, in which a physio was insisting that I was “in denial” about my illness. According to her, I was depressed. This was repeated in the report and, of course, every descriptor was ‘normal’. Nothing to see here folks! Move along.
      My old Oxford English dictionary, from 2002, defines ME/CFS as: “a medical condition of unknown cause, with fever, aching and prolonged tiredness and depression.” Obvs., this is an out of date definition, but it’s not too bad. It actually says it’s a medical condition, which is more than some medically trained people seem to think. It’s been defined as a neurological illness for many years, but that doesn’t seem to have been accepted by the medical community at large. This affects and has affected my perception of myself and my illness from the very beginning. Not being believed or feeling that you’re not being taken seriously or are being dismissed, can be as damaging as a Pace trial would have been for me. It is only in recent years that I’ve become aware of a more positive perception about ME and have actually gained more confidence in what I’ve been experiencing all along. I always knew that what I was experiencing was not depression. I didn’t feel depressed and it did not explain certain aspects of my symptom picture. When it’s at its most severe, it’s very easy to mistaken those symptoms for depression. Some people will experience depression due to the level of severity and overwhelming nature of the illness. For many with ME, the symptoms of depression came after they became very unwell, not before. Ppl experiencing chronic pain or illness recognise this. I should add, there is nothing wrong with experiencing depression, for whatever reason. It can be just as debilitating. It’s just that I didn’t feel that it was relevant to what I was experiencing.
      We have to be very careful about focusing too much on a particular model as all different areas of chronic or severe illness are important. The psychosocial model has been prevalent re: ME for too long. I’ve been experiencing different levels of ME for a very long time. Many, like me, fluctuate and can be housebound or bedbound. We need it to be taken seriously and we need biomedical research.
      I’ve been a meditator for over 20 years. It helps me enormously in my day to day life and is highly beneficial and recommended. It hasn’t cured me. Do you know why? Because it isn’t “all in my head”. 🙂

  4. The social model sites barriers to inclusion in society, in organisational and physical structures and in social attitudes. What is experienced as a barrier varies depending on impairment. I have ME but I can get up stairs (not repeatedly, but enough to get into my flat and out once a day). I don’t need a wheelchair, I don’t need level access (though it’s always helpful, especially when exhaustion hits hard). I can see and hear and I have no obvious impairment and don’t look as if I need any assistance. When I do need help you won’t see me as I am at home, in bed, sometimes for days or weeks on end. Other times I’m out and about for a while, and on cursory inspection I am likely to look completely ‘normal’.

    So how I get treated by others is different to how someone with a visible impairment tends to get treated. I don’t get generally patronised or pitied, or told I’m an inspiration, or admired for my ‘courage’. I don’t get offered help when I don’t need it (in fact I rarely get offered help when I do need it), or have it assumed I cannot do things (more often it’s assumed I can do things, which I can’t). I don’t get verbally targeted with hatred or physically attacked because I’m physically different. The fact that these attitudes and treatments aren’t directed at me, but instead it’s assumed I’m fine, that I need nothing, that I have no problem, that if I ask for help I don’t really need it, is also a barrier to social inclusion.

    The fact that it is generally assumed that everyone has ‘normal’ levels of stamina discriminates against me. My stamina is way too limited to allow me to do any paid work now, but I often cannot even find part-time classes, or meetings or leisure activities I can attend as they go on too long. Classes usually last at least 3 hours – but two hours is my max (on a good day). But I have to pay for 3 hours and I have to pay on a regular basis even if I miss half the classes because I cannot get out of bed some days. In fact I may not be allowed to join a course unless I can do the full time period. And I miss out on the socialising aspect, which compounds my exclusion. I have been turned down for voluntary work too, because I could not commit to more than two hours a week on a regular basis.

    There is a serious lack of awareness in society about the needs of those of us with this kind of ‘invisible’ difficulty – and that is also disability discrimination. These exclusions stem from society’s attitudes about what is ‘normal’ and society’s assumptions about ‘normal’ human behaviour and capacities.

    As a disabled, chronically ill person with an invisible impairment I find the social model pretty useful.

  5. hi jenny,

    thanks for the offer.

    yes, my comment could have been a post here (or on my blog), but it needs polishing.

    i’d like to, but i do not have the health resources to polish it.

    please feel free to draw from it, if you want.

    if you google “motte and bailey argument” you will find interesting and accessible examples.

    basically, social model proponents often use the “all we are saying is X” claim when pressed, but all over the media are actually saying in practice things that are profoundly harmful to pwmd [people with misopathized diseases].

    i also oppose using “impairment” as if it were a synonym for “disease” [or as if diseases don’t matter]. this is especially problematic for diseases like m.e. that very frequently progress, sometimes overnight and without warning.

    m.e. [and other chronic diseases targeted by misopathy] is profoundly impairing and profoundly disabling, but it is much more than that. it is also a /disease/. (like hiv/aids before hiv was discovered, for example.)

    it has to be emphasized again and again — and again and again — that mild pwme are only one exposure away from becoming bedridden.

    i want the disability community to be our friend, not our enemy.

  6. The Social Model applies to me. (Rheumatoid Arthritis. Fibromyalgia. Hyper-Mobility Syndrome. Complex PTSD).

    Society prevents me from fully participating in society. Society includes government who decide arbitarily how poor I am. Society decides against having inclusion policies at all levels and spheres. Society is brought up to be ignorant through lack of education and experience. Society uses ‘divide and rule’ as its favourite doctrine.

    “Men and Women; Equal but Different” was a tag line the Equal
    Opportunities Commission used.

    “Humans; Equal But Different” might be one we all start to adopt.

    All my Disabilities are invisible. People only ever see me when I am ’ok’ by definition. I get judging looks and have been shouted at for using/ asking to use priority seats. People don’t ‘get it’ despite my repeated information.

    I am judged to be a consumate liar by the DWP even though I sleep/ lie down 5 days a week. I have no social life and am judged and denied an early pension release for not ‘exercising’, as if I’m making a personal choice to be unfit and weak.

    Unite. Don’t fight. ✊?
    Injustice wins if people are too busy squabbling.

  7. I tend to agree that the social model misses medical needs, but then I think that there are social barriers to getting medical care for an unpopular or little-researched disease. There are social barriers for researchers to enter an unexplored field of medical research.

    I think the social model can still explain lack of medical care, but as Samuel has said, people need to not fear that it’s a zero sum game of social vs. medical accommodations. Some need one and some need both, and it shouldn’t be mutually exclusive.

  8. To me the problem with the social model is that it’s hiding a lot of complexity and required discussion by lumping everything into the bucket of “society’s problem” which this post partially acknowledges.

    Even this post though glosses over the distinction between what society should be able to adjust to and what counts as a “limitation” we don’t expect society to be able mitigate. This is a conversation we need to have and seems to be the meat of the issue to me. Where do we draw the line? How do we define limitation vs disability? The details of these questions matter and are not obvious. To be clear, I think society should be much more flexible than it currently is and that it would be to everyone’s benefit if society were flexible enough to allow chronically ill people to participate in more work, social and political activities. I just don’t think we should expect society to be infinitely flexible and that for practical reasons we need to have some criteria for deciding what is flexible enough.

    There’s a point made in economics about the optimal amount of undesirable human behaviours like crime and pollution. It states that, for example, the optimal amount of crime in society is not none because there is a point where the amount of time/effort/resources required to reduce crime rates becomes much more costly than just allowing a certain amount of crime to happen at some point. So to maximise utility we have to acknowledge that it’s better to accept a certain amount of crime and try and punish the perpetrators. I think the same principle has a say (but not total control) over deciding where to draw the line on what society should be expected to adjust to.

    In terms of principle, I’d love for all sick and disabled people to be able to do anything a healthy person can. In terms of practical real world trade offs, there is probably a balancing point where the amount of effort and resources required to be more inclusive is too much compared to the amount of freedom it grants sick people.

    As the post says I think this problem with the social model exists because it wasn’t designed with chronically ill people in mind. Our capabilities vary, we don’t have purely physical limitations that are predictable and constant.

    So…yeah, not sure how clear this is, it’s a difficult concept to get a nice neat conceptual frame on.

  9. One of my symptoms is chronic pain (post-operative neuropathy from failed lung surgery). There is nothing society can do to (and no attitudes that can change) that can make this pain any less disabling. So in this context, the social model fails.

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