Ill versus disabled – is there a distinction between the two?

Joyce Fox examines society’s differing reactions to disability and chronic illness

Disabled activist, Stella Young recently wrote: ‘The social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality. My disability comes not from the fact that I’m unable to walk but from the presence of stairs.’

How true is this of people who are chronically ill? Accessibility is rarely the issue – we often have little energy to go out at all.

Hostile attitudes: yes, to an extent particularly if the people in our lives are not supportive – but how many people do we actually see?

Severely chronically ill people are not out there like many disabled people. Depending on the disability, many disabled people share much, much more with the well than we do.

“Relativity by M.C. Escher
Relativity by M.C. Escher

Young, for example, writes about how she was included at work but socially it was a different story because pubs, restaurants, bars were often inaccessible.

How many severely ill people still work or socialise?

Young continues, ‘We are not wrong for the world we live in, the world we live in is not yet right for us and we need to change it.’

She has a point. Apart from the daily struggle with physical suffering, what I battle with most is the isolation and that is caused by other peoples’ attitudes to illness.

If only we could change ‘the world’, in other words, change people.

Why can’t we be accepted as we are?

It is interesting to note that though many visibly disabled people feel that they are not accepted because of their outward appearance and ‘difference’, actually the same is true of the invisibly ill.

Even if you can pass off as a ‘well’ person for an hour or two, people can usually sniff it out that there’s something wrong with you. Even if you make up a biography for yourself so no one knows you don’t work or rarely go out, there’s just something about you …

Dogs sniff each others’ behinds and so do humans.

The pack rejects the weak.

Can we change nature?

I am sure there is a reason why Black people and gay people have progressed so well in their fight to be accepted by society. There is nothing ‘wrong’ with being Black or gay. Different yes, but essentially, not dangerous.

But serious illness frightens and disgusts people. At some level, we are perceived as dangerous.

Perhaps it is a survival mechanism to avoid and reject us.

I still believe that there are kind people in the world but unless you’ve walked in our shoes it is extremely hard to understand what it’s like to be severely ill your whole life.

And if you don’t understand you’re unlikely to sympathise.

by Joyce Fox – guest edited by Fran Halsall

Joyce Fox has been ill with ME for 29 years. She is the author of Surviving ME (Vermilion, out of print but available on amazon). She runs Facebook groups for creatives and professionals with ME.

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This Post Has 24 Comments

  1. I actually say I am disabled rather than ill most of the time. I have fibromyalgia and hypermobility spectrum disorder, and both are classified as chronic illnesses.
    I think this might be because when I’ve said “I’m ill” in the past, people assume I will improve. When I say I have a disability people don’t ask if I’m getting better. I think illness is often treated as transient while disability is viewed as permanent.
    But I’d be interested to hear what others think!

    1. Agree with transient versus permanent.

      I suffer from recurrent pneumothoraces (collapsed lung). My right lung didn’t form properly and, for the rest of my life, it will carry on thinning and perforating. Surgery can repair the damage but not stop the condition.

      I use the term “ill” when I have a collapse because each one gets better. I use the term “disability” to describe the condition because it’s permanent.

  2. Isolation too often affects people with hidden disabilities such as diabetes and dementia. At my mother`s nursing home not only are the residents immobile, confined to their chair and/or bed throughout the day and night but all are suffering from various stages of dementia and there is NO provision for such people in the outside world unless, they pay for it!! Is this a civilised country??

  3. I was chatting with a few elderly acquaintences about arthritis and getting old. They were complaining about getting arthritic joints in their 60s and 70s. I said mine started before I left school!! Try living with arthritis in all your joints from a teenager. They were shocked. Then there’s the reactions to all the drugs I’ve been prescribed over the years and the severe, sudden attacks to various joints at any time which have led to periods of hospitalisation. I wouldn’t like losing limbs or being paralysed but when they are stable and have adaptations and equipment they can get about and join in to some degree. I am a hermit.

  4. Very good article …..but in my eyes illness is a disability … reason for saying this is that many people who are fit and well avoid people like me ie I am paraplegic and chronically ill all the time. I am invisible in stores or when out in my w/chair so is that a superpower or just ignorance of the people who try to walk through me…..I personally think it is ignorance and a view of an uncaring society. I dont know where I would be without my wife and as she is my full time carer she gets ignored as well……this really gets me mad and I do tell people to watch out……in a very very loud voice.
    The things I have that still work are my voice and my fingers(for lobbying politicians) so I can use my computer.

    One thing that helps people like me is the internet as you can stay in contact with the outside world….this opens up new borders to the disabled and sick.
    This is just my view but after talking to various groups I see that it is a view held by many other disabled and ill people…..this government is no help to us but that is a whole other topic that I could write about for hours.

  5. In the part of the country where I was raised, the mantra for illness was the same as that for poverty; so, ‘no shame in being ill, the shame lies in looking ill’ and even more shameful, ‘talking about illness’. I have a congenital, systemic and progressive condition involving multiple surgeries from an early age, but always returning quickly to work. Attempting not to put my weaknesses on display has often been wearing, but is a deeply ingrained trait and has meant frequent lifestyle adjustments, even moving away from partners and family members. Others are inclined to lean heavily upon me and as the years have passed, I find I can no longer take on their burdens. Now that I am approaching my mid-sixties, I no longer cultivate friendships and rarely leave home, but this has been a necessary adjustment and I am accepting of it and not unhappy. If I venture into my front garden, one of my neighbours will often accost me and their first words are guaranteed to be something pertaining to an ailment of theirs. I find this horrifying and ill mannered, so many interesting subjects to discuss and yet my neighbours are all fixated upon GP appointments, blood tests, symptoms and diagnosis. This seems to be endemic in the area in which I now reside. I am not an unsympathetic person and have always tried to show kindness and give help where it’s required, but when folk define themselves by illness and it becomes the focal point of their conversation, I am at a loss to understand.

    1. Maybe people keep telling you they’re ill because the benefits system they rely on is denying them.

      I’ve noticed how the benefit scrounger mentality has affected my inner narrative when awaiting two Work Capability Assessments.

      For months my mind constantly played out an inner narrative where I would mentally note my all my health insufficiencies, meticulously observing how they restrict my functions, rehearsing for the day when I would have to account for my disabilities to an unsympathetic audience, desperate in the knowledge that the game was rigged by the psycho-social model of benefit claim denial of multiply-prosecuted ATOS originating in the US.

      Even though the dreaded WCAs took place months ago, I am still finding it hard to silence those obsessive thoughts and hopefully return to having a positive outlook on life although I’ve noticed I’m becoming increasingly hermit-like.

      1. Here is a superb article by an academic and practicing psychologist, Dr Jay Watts, who unlike most of civil society, in my long experience, and the left, unions(no motions on these issues), and churches, is very vocal about the way disabled and sick people(DASP)/claimants are being treated by the State. it might be worth contacting her, i have.

        warning, this article may be distressing

  6. I have long been of the view that being chronically ill is somewhat different from being disabled, although the distinction is often difficult to make for individual ill or disabled people. Most of us are both disabled and ill, with the nature of the combination varying greatly between individuals. There is no “bright line” distinction; people’s difficulties are highly nuanced, a fact that those concerned with societal categorisation should always remember.

    I believe people who are chronically ill have in the past been poorly served by the disability movement as a whole, but especially by those who seem to forget that the social model is just a model, and that no model can go very far in describing the human condition. But what is much worse is the attitude of a minority of disabled people to those who are chronically ill. In recent years, in large part due to the harmful deficiencies of the Work Capability Assessment, people who are chronically ill have started to find their voice and have developed a perceptive understanding of the way in which aspects of the social model of disability are less helpful for them due to the nature of their impairment. However, a minority of disabled people have reacted very negatively to this growing realisation by those who are chronically ill of the social constructs that impair them, and their adoption of a distinct identity. Are disabled people so insecure that they can’t cope with a group who sees itself differently?

    I believe the social model is relevant to people who are chronically ill but only if it is not applied in a simplistic way. As the article explains, attitude is a huge barrier to participation for those who are chronically ill. How far do people view chronic illness as a kind of deviance? How do others view the attitudes and motivations of people who are chronically ill? To what extent are people’s attitudes shaped by their own deeply held, subconscious fears about weakness? Do others believe those who are chronically ill could “try harder”? Could these subconscious attitudes even lie behind the motivations of those clinicians who remain adamant that despite its flaws, the PACE trial is valid and a combination of CBT and graded exercise are all the interventions needed by people with CFS/ME?

    For those who are chronically ill, even more than other disabled people, attitude is everything, when it comes to inclusion. Perhaps the most important attitude is an acceptance that for people who are chronically ill, their symptoms are a major barrier to inclusion. The social model, by its very nature, focuses on society not symptoms, but as with any model it is our servant, not our master.

    1. I believe many people are so shocked and appalled at disability that the jolt of cognitive dissonance that they experience when they see blameless pain compels them to imagine that there _must_ be a reason for such suffering and therefore end up subconsciously judging the victim for a perceived or imagined cause for their deserved disability. ‘Just a human coping mechanism, not pretty to witness – but one should try not to take it personally.

    2. Wonderful post Jane, I hope this forum is going to a main form of communication, for CI and the wider world.many CI people are largely invisible. Though of course Disabled people are largely treated like dirt by the state as well.

  7. Stella Young died on 6 December 2014. So I’d be impressed if she wrote anything recently.

    1. Indeed, we should have stated that this blog post has been republished from an older blog series by Joyce Fox. The original may well have predated 2014.

  8. I see myself as ill and disabled. I have secondary progressive multiple sclerosis. This illness causes disabilities. It’s not helpful to view it as either/ or

    1. Completely agree!

  9. An illness is a medical condition, while a disability has physical restrictions .

    1. I think it’s more nuanced than that. So for example, a person with severe ME has the physical restriction of post-exertional malaise, which can be totally disabling.

  10. Just to be provocative: how much would changing people’s attitudes help us? Leaving aside the benefits system, what would change for us?

    I ask because, as well as having a physical impairment and an autism spectrum disorder, I’ve been chronically ill for several decades. I’ve been surrounded for the most part by people who get it; who understand as much as it is possible to understand another person’s pain.

    Has it made my life easier? Psychologically, yes. Hugely so. Being surrounded by family or friends who deny your illness must be a desolate experience.

    But it hasn’t helped my illness at all. Positive social attitudes will make me feel supported, but they can’t make me able to work, relieve my pain, stop me falling, or give me the energy to answer the phone.

    This is where the social model fails: the real problem is not society or attitudes, it’s my body. No amount of equality legislation, access to public transport, reasonable adjustments, or supportive friends will ‘un-disable’ me.

    We need to move away from our current concept of disability. It’s become an exclusive club based on a false binary: you are disabled, or not. You are impaired, or not. You get offered special treatment, or not. You get more benefits, or not.

    But we’re all impaired to some degree, and we will all become more impaired as we age. So at what point are people allowed to join the gang? How many bits have to drop off or stop working? And if quite a few bits stop working, do they HAVE to join the gang? Or can they keep their identities as a black man, a football nut, a Sikh, a lesbian, a Scot, or a heavy metal fan?

    What happens when there are more people in the gang than not? Is that when we get ‘inclusion’? Or is that as much of a myth as the fully-accessible society?

    (Do we even want inclusion? I’m not entirely sure what it is, but I have a sneaking suspicion that I don’t. I haven’t got the energy.)

    1. I disagree with your view that the social model of disability cannot help you unless you are saying there is absolutely nothing that could better enable you to use what capabilities you do have. The social model is all about enablement, starting from where people find themselves. Practically everyone in society has something to offer, a life to experience and most importantly an intrinsic value. So yes, we do need a more inclusive society and that’s what it’s all about: removing barriers and enabling everyone to be the best they can, whatever their circumstances.

      1. John, I would ask you if you suffer from chronic pain.

        It’s a symptom Fionn mentioned and it’s one I believe that the social model makes absolutely NO difference to. Sympathy/empathy does not lessen my pain. No adaptations within society can lessen my pain.

        “This is where the social model fails: the real problem is not society or attitudes, it’s my body. No amount of equality legislation, access to public transport, reasonable adjustments, or supportive friends will ‘un-disable’ me.” <— When considering the pain I suffer, I 100% agree with this point.

  11. I’m disabled I have Fibromyalgia and lay man’s terms my necks crumbling. Over the past couple of months, I’ve had to start using two walking sticks which oddly has made me more invisible, why this should be I really don’t know? The able bodied friends I had have all but disappeared leaving me with a few fellow Fibro friends.
    Before my neck got worse I was included much more, invited round to friends houses for a cuppa the normal friendship things.
    The distinction between illness and disability I believe is lack of knowledge, they are one and the same. A severe bout of flu in an otherwise healthy none disabled person will ‘disable’ them for a while they’re still accepted as people understand they will get better. The friends I had accepted my Fibro for a while until they realised I wasn’t going to improve and my neck made my ability or lack of worse. This is true of society as a whole. Inclusion in society has improved a little with ramps automatic doors, specialised lifts etc but these in turn almost anger able bodied because their lack of knowledge means they don’t know why we need it. Another example of lack of knowledge is why someone who uses a wheelchair in a supermarket can stand up to reach an item off a shelf needs the wheelchair, or how can a disabled person drive a car, I’ve been asked that question.

  12. A chronically ill person is impaired by their illness and disabled by physical, attitudinal barriers. This is as much about processes as ramps etc. The author seems ill-informed over what the social model is actually about. Disabled people who are chronically ill need to be enabled to live fully effective lives just like everyone else. The social model applies generally. One person may need an electric wheelchair to get to work more easily; another may need access to audio books so they can study or just enjoy a good read whilst being largely bed-based.

    My wife has severe ME and the social model of disablility has enabled her to contribute to society from her bed.

    In my work place, we are trying to engender more open and honest conversations about what colleagues need, to do their jobs to their fullest capacity and to become the best they can. This includes disabled people who are chronically ill. Some may need workplace adjustments such as screen readers or special chairs, and others changes to processes allowing them to work flexibly from home.

    The key problem facing us today regarding disability and chronic illness is our society’s obsession with perfection; its very limited view of what constitutes a meaningful life; and the perennial fear of difference/deviation from its ‘norms’. We need to spend enough time and care to listen, to understand and to empathise. In this way we can then apply the social model more fully. When designing for disability and the fullest inclusion, everyone benefits. How many us know that text messaging is founded on designs for how to improve communication for deaf people?

    I don’t agree that serious illness ‘disgusts people’ nor that the chronically ill are in some way ‘dangerous’. The behaviours that lead the author to these conclusions are most likely to be rooted in fear of being disabled, of being robbed of what society defines as a meaningful life. And so we come back again to the need to apply the social model of disability as fully as possible.

    The author chooses to focus on some very negative imagery. True, society can be a harsh place, but society comprises each one of us, each moment of every day. I prefer to focus on both the potential for good and the actual good that is done every day to create greater inclusion and enablement.

    The author is quite wrong in her assertions about being black or gay. Sadly even today, there are those who still think being gay is wrong, disgusting and dangerous and that black people should ‘go home’. Just look up the stats on homophobic and racist attacks.

    The author’s statements belittle the current problems these groups still have and makes me think of the term ‘oppression olympics’.

    I worry over the able-ist attitudes I often hear from people who are chronically ill and the sweeping generalisations made about ‘other’ disabled people, perhaps falling into the trap of assuming that most of the disabled community are like those in the para-olympics!!! For example, I often hear of chronically ill people resisting using a wheelchair because they see it as some sort of defeat. Sadly they are not only disabling themselves, but also giving further sustenance to wider society’s perception that using a wheelchair is some sort of tragedy.

    The social model and disabled community have served my wife well for 25 years and I feel that articles like this are in danger of undoing a lot of the hard work by her and other disability activists. She is campaigning hard for an ME friendly world using the social model.

    Please remember that the opposite of disabled is enabled. It is not about being unable or broken or in any way a lesser person.

  13. This is a huge subject. Having had ME for 12 years now, I’m unable to do so many things I used to, therefore I’m disabled. Many things could help me be more enabled, such as easier access to buildings, a system that will believe that I have mobility issues and help in that area. Maybe when you are ‘accepted as being disabled’, you should be issued with an ID Card of sorts to prove you’re not just being idle as many seem to think we are. A large part of having ME seems to be losing your social connections, whether they be work, sport or other types. People in the main seem to leave you behind, causing loneliness and other changes to your life. With limited energy however, it can still be possible to create a new normal, a new life, but that takes time and a big shift in attitude and outlook. A difference between ill and disability ? There can be many with a disability, who don’t feel ‘ill’, yet with ME, along with the disability, I can feel very ill too. As has been said above, if we state that we are ill, the expectation is that we will be better soon. With a disability, not so much so. Maybe the only thing we have going for us is that people will at least believe that disability isn’t ‘catching’……On read-back, apologies for some of my comments. Maybe I’m still a bit bitter and angry at being hit with a disability, but I have worked to achieve a re-focus in life by raising ME Awareness through a number of avenues, including the website

  14. I welcome this article 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.

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