Monday, 17 November 2014

The Unwanted Guests

I try incredibly hard not to air any dirty linen in public, but I am totally sick and tired (no pun intended) of self professed "real disabled people" who insist on patronising, belittling and criticising those disabled through long term illness. Even of those with no disability at all who ruminate and opine on how I should classify myself and what I should be entitled to. So called "experts" covering their enormous prejudice with a fig leaf of academic lexicology.

For decades, thousands of individuals and hundreds of disabled people's organisations (DPOs) have campaigned fiercely and justifiably for the empowerment and inclusion of people with physical impairments. Using the social model of disability that states people are only disabled by the rigidity and stigmas imposed by society rather than the various impairments they live with, this has led to huge improvements in the way people with disabilities live their lives. A focus on independent living and mainstreaming has opened up the world for many who were previously written off.

But in the last few years, those of us most under attack from the current political obsession with "welfare reforms" have found a voice too. We are merely an unwell needle in a haystack of disability, yet it would appear we threaten the old school disproportionately. Concerned laments and wails of outrage ring out each time any of us dare to say anything at all. No matter that our livelihoods are under attack, our homes suddenly insecure, our health threatened still further by ignorant politicians. Should we dare to try to fight for our own survival, we meet a barrage of insults and are told off for "speaking for all disabled people". Which is ironic as that's exactly what those who are most critical  have done for decades.

I've been regularly and insistently assured that the social model of disability applies to me just as it does to those with congenital or physical impairments, yet how does society disabled me? Even if we lived in a utopia of inclusion and acceptance, I'd still vomit on my bosses shoes and spend most of my day in the toilet. An acceptance that there is any medical element at all to any disabilities at all stems from the fierce opposition those with physical disabilities put up to being "medicalised" and dismissed throughout history.

And it is utterly clear that these old schoolers do not want to be associated with us poorly people at all. They will jump up and down in outrage at this, deny it forcefully, but absolutely everything they do and everything they write betrays how they really feel. there have even been discussions about "separating us out" from disabled people and removing entirely the support we rely on if we cannot work in a self-supporting way. They criticise the language we use, the way we perceive ourselves, our symptoms, our fears and our aims. They have called us "fake disabled" "lazy and workshy", some have even accused us of wanting them killed at birth or re-institutionalised. How can there be any kind of sensible debate with accusations like that bouncing around every word we dare to utter?

The simple truth is that we are the first generation to benefit from enormous medical advances that have saved the lives of those who would previously have died young from serious illnesses. But we haven't yet learnt to do it comfortably or adapted to incorporate the skills of those affected. From distancing from us entirely to criticising every word we say, the old schoolers have proved very grudging hosts to this particular party.

But here we are, invited or not and we're here to stay. Over the next few decades, the proportion of those disabled by illness will increase and we will need to find a new discourse to explain our challenges. A post-social model if you will. One that accepts that there is a medical element to some disabilities and it doesn't threaten the whole to acknowledge it. One that faces up to the barely veiled sneering they have approached us with so far and tries to genuinely find ways to move forward. How utterly ironic that those who have fought so hard and so long for inclusion now feel much more comfortable excluding the nasty, untidy impairments that don't quite fit with their view of the world.

If we can't manage to make the transition towards this basic alliance, perhaps the least we could do is stop shooting off on a hair trigger every time someone dares to express their own issues and concerns. Perhaps we can learn that just because one person holds a particular opinion,  they don't speak for anyone else. However, should that opinion become very popular and should many people choose to read those opinions and share them - of their own free will - then all we can do is accept that there really are serious issues that led to them being expressed.


  1. If anything, one could claim that those of us with illnesses that make us feel like we permanently have the flu, nausea, vomiting, too ill and tired to stand up, etc, ,,, actually are more disabled than those who have a physical impairment, but otherwise do not feel constantly unwell. But, we tend not to play this pathetic point-scoring game. Too busy trying to bloody survive. Well said as usual Sue.

    1. Quite Pamela. The "I am considerably more disabled than yow" argument is a fairly pointless one, but I have a very close friend who is quadriplegic, and we discussed many times that he believed I had more barriers to work than he did, long before I even knew what the social model was.

  2. Thank you Sue.
    There seems to be a misguided belief among some that people living with chronic illness have not properly adapted to it because they still "medicalise" it and that this is down to an emotional or intellectual failing on the part of the individual.
    This shows a complete lack of understanding of illness. Chronic in no way necessarily means stable. Many of us still have to see doctors and the inside of hospitals, probably for the rest of our days.
    Some of us will experience regular periods of "acute" illness as our chronic illness flares and then comes back under some semblance of control.
    Some of us have illnesses which are degenerative and are constantly having to reevaluate the support we require, including medical care.
    Or perhaps the illness fluctuates and the support we require changes rapidly.

    I do believe there is a place for the social model in chronic illness. We can be more disabled than we need to be by very simple things.
    For instance if the GP surgery refuses to do house calls or telephone appointments, then that is a big problem.
    If an employer refuses point blank to allow home working or flexi-time, then again, that can be a problem.
    Good rapid access to healthcare is vital to people with a chronic illness and this also is often lacking and a huge issue for many.
    You could regard these as barriers under the social model which, if addressed, can improve lives considerably.

    But any model needs to recognise the inherent nature and direct impact of illness. The social model doesn't do that. It doesn't need scrapping though, as many think we are advocating. It needs updating. No one is saying this is an easy task. But dialogue is required if we are to succeed.

    1. I would say that the model's application needs refining. There's already score in it for what we need.

    2. And obviously that should have read 'scope', not 'score'

    3. "If an employer refuses point blank to allow home working or flexi-time, then again, that can be a problem"

      The same could be said of mental illness as chronic illness. Mental distress is often accompanied by physical symptoms. Anxiety and depression are linked with panic attacks and enduring symptoms of stress. The nature of even common mental health conditions can mean that someone is not able to leave their home or go out alone without support. People can quickly become isolated and excluded. Would it fit into the social model in that a reasonable adaptation might be that sufferers could maybe work from home, but not be able to travel, or tolerate and function in a work environment. They may not cope with social interaction without distress. Where medical conditions are often treated, mental illness is not. There have been no waiting times targets for therapies. Many are sent packing with a just a prescription from GPs and left to get on with it alone. Treatment is woefully underfunded and not given parity of esteem in the NHS. Strange when the reality is that mental illness is a medical condition, arguably triggered by psychological stresses. Employers discriminate much more against people with mental illness and chances of finding employment once diagnosed are poor. This group more have a tough time, accused of malingering, discriminated against, disqualified from ESA, struggle to qualify for disability benefits, stigmatised, untreated, overlooked and unlikely to be employed. That's quite disabling.

  3. The same criticism of the social model, that of even perfect inclusion not removing the actual experience, has been levelled by those with more 'traditional' impairments such as blindness.

    To my mind, the problem largely stems from people getting carried away with the social model, or misunderstanding it, and taking a terminological distinction to mean that disability (imposed by society) is the only factor of concern. This is *not* inherent to the distinction. One can still assert that impairment is inherently limiting even in a perfect society. The social model is principally a matter of definition, as in any sociological model.

    So absolutely criticise those who assert the dubious conclusions, but that doesn't naan throwing out the useful definitions in the model. Indeed, the separation of impairment and disability gives us the language to discuss the fact that some impairments are limiting independent of social factors.

    Also, the social factors can be indirect. The disadvantages of frequent vomiting include multiple social elements, they just sent all simple or in any way easy to mitigate. We need to fight the focus on low-hanging fruit.

    Lastly, a note on language. I'm still entirely in favour of "disabled person" rather than "prison with disability" because disability is *not* inherent in people, but is imposed upon them, and I don't think that really requires the social model. Whether disabled by society or by illness, that's not *you*, it's not a fundamental part of the person, however much we have trouble remembering what it's like to not have the problem (s).

  4. I expected much more ire here, so I'm pleased to see such thoughtful comments. I think SpoonyDoc hits the nail squarely on the head with :

    "There seems to be a misguided belief among some that people living with chronic illness have not properly adapted to it because they still "medicalise" it and that this is down to an emotional or intellectual failing on the part of the individual.
    This shows a complete lack of understanding of illness. Chronic in no way necessarily means stable.
    But any model needs to recognise the inherent nature and direct impact of illness. The social model doesn't do that. It doesn't need scrapping though, as many think we are advocating. It needs updating."

    1. Sometimes people with chronic illness cannot adapt as well as they'd like because of lack of access to appropriate medical advice, equipment, pain meds etc. It is possible to live a good and fulfilling life with chronic illness, but to do this successfully requires a lot of support and the flexibility to change your lifestyle to fit around the illness. Many people simply cannot live optimally with their illness because they don't have the support or resources to do so. That is disabling.

  5. Think I lost my long comment. I agree with you Sue that there are more of us surviving chronic illness or with problems as a result of treatment. I had no idea you were being criticised for speaking out. When we are all under attack from DWP we should stick together and support and learn from each other surely.

  6. There is a world of difference between being physically impaired and disabled and being sick and disabled.That difference means that one disabled person can win a gold at the olympics while another cannot get out of bed.This difference should not mean that one person is more or less disabled than the other but it can often mean that one person is often much sicker than the other.I often think I would be better off if I were JUST disabled instead of SICK and disabled but we deal with the life we are given.The most we can hope for is the same tolerance from other disabled people as we want and need from the more able amongst us.

  7. Hypocritical bullshit from the sly bitch that emails and PM's people to warn them off of people she doesn't like or who doesn't like her.

    You are as bad as Simon Stevens, it's just that he is open about what he does (and god help me for saying something positive about that idiot)

  8. In a world in which all social barriers were removed, I'd still have multiple impairments. Both a lifelong mobility impairment and more recently acquired chronic illnesses.

    Even if I just had the mobility impairment I've always had; I still need medical care. I've spent today on the phone trying to see a doctor about 2 recent injuries arising from that impairment. And not succeeding.

    People get confused by the phrase "medical model" as being the opposite of the social model; because it is badly named. It's also known as the "individual model" but I think the most appropriate name; given what it actually means is "the 'well it's their tough shit for having something wrong with them. We as a society aren't going to do anything to help them' model". But those sociologists 35 years ago sadly did call it the "medical model" and so many people's immediate assumption will always be "well, if they're rejecting something with the word medical in it, they must be rejecting medical care and that's no use to me."

    Even when some of the most staunch social modellists require round-the-clock nursing care like airway suction and ventilators just to keep breathing. People who would drop dead instantly if medical support were removed.

    Getting iller because you weren't allowed medical care when you needed it? Social problem. Healthcare is a product of our society. From antihistamines to chemotherapy; we wouldn't have them if we hadn't evolved this society that we've got.

    Denial of healthcare is a massive disabling barrier for millions around the globe.

    Remember that the word "disabled" means "prevented from functioning."

    If people feel they're not disabled because they've never been denied healthcare, or they've never been denied mobility aids, or they've never been denied things like DLA (which is a social solution designed to even the playing field), or ESA (which keeps people alive and functioning at a subsistence level; even if not allowed to thrive) then that's entirely their prerogative.

    But me: I'm gonna sit here waiting for the phone to ring; feeling disabled by the fact that medical care that meets my needs isn't readily available and therefore I'm not able to function at my maximum potential.

    1. Indeed! And even where no social change will enable a person to work (assuming for the sake of argument that such can happen), the fact that being unable to work leads to social exclusion is also a social issue.

  9. I'm a wheelchair user with CP, that I suppose in some people's eyes at least, a real disabled person. I also have a chronic health condition, and mental health needs. CP is no picnic, but given its obviousness, and the fact that practical support can make a difference to how I manage it, it is for me easier to deal with. The effects of the other conditions are just as real but can't be seen, so to most people they are 'nothing.' Going to and disabling. the supermarket or a medical appointment are straightforward for most people , for me,can be major challenges. Having o eat slowly, or not in public may seem a fad, as may not eating certain foods, this fad gives me the best chance to stay healthy, Each of my conditions are different, but equally real, challenging,. and disabling.

  10. Thankyou for writing this. As someone who has chronic pain I feel awful every waking moment and I'd still feel ill in a perfect world. The social model ignores the effects of illness which always made me feel uncomfortable with it (I was born with a visible, obvious disability). I also agree with Spoonydoc's comment above, difficulty in accessing medical services can amplify the difficulties of dealing with a disability however it was acquired, from birth or illness.

  11. I have being saying similar for many years. What became the 'Social Model' was preceded by the defining of Societal Barriers and the need for Enabling Environments.
    Unfortunately a very simplistic view of the Social Model took root completely ignoring the need for enablement.
    As with a similar 'power word' tactic it was deemed necessary to shout down anyone who either disagreed or understood the real meaning of the Model.
    Simply we are prevented from reaching our potential by the 'barriers' accepted by Society and we need to create a Society where there is provision to include us.
    Personally I cannot see a difference between a Disabling Illness or Physical impairment - different enablement is needed if possible but it's the same lack of provision that is identified.


    P.S. The other power word of the time - Handicap - which has nothing whatsoever to do with 'cap in hand' but could cause the 'casting out' and 'cursing' of anyone who used it...... Then and now prefectly acceptable in the USA

  12. All these problems and arguments horrendously facilitated by the unfair and uncaring governance in Great Britain today. So crazy and sad.

  13. Thanks for writing this Sue, I think that you have made very valid points. As you say what Employer would put up with our amount of toilet breaks? I could write more, but my toilet is calling, yet again.....ugh:(

    1. Those who believe equality can be achieved by an enabling society, would have you forced to work sitting on a commode and those who vomit forced to have a large tank next to them at work to vomit in . However, this doesn't address the fact that severe illness is not merely disabling but a torture that cannot be stopped. It is not reasonable or compassionate to expect those experiencing moderate or severe torture to work. Dare I suggest that there are disabilities which are also experienced as torture, no amount of altered attitude toward this state of suffering, can change that state of suffering. In my opinion models of illness and disability are devised for those who fund their research, governments whose only aim is to save money whilst having a model/research to justify their cuts to the voters.

  14. Well put, Sue. Great post.

    My own thoughts:

    Society is grossly unfair and unequal, and this is a truth that must be hidden at all costs by TPTB, because that would involve accepting their own good fortune, and letting go of their cherished idea of superiority.

    If, overnight, those of us with disabilities, invisible or not, curable or not, were given everything we needed to contribute fairly according to our abilities (like financial security, truly inclusive education, elimination of the spectre of homelessness and destitution), then the rest of society would scream that it was unfair, and that our lives, conversely, were easier. And, under those circumstances perhaps they'd be right.

    To improve society for us means to improve it for all. It means to admit the ugly truth of inequality and effectively seek to redress it with every policy. In my opinion, the establishment will never ever do this, because they'd risk losing everything before giving anything at all. To quote Morpheus from The Matrix (because I can): “...many of them are so inured, so hopelessly dependent on the system, that they will fight to protect it.”

    So after that, what's left? Gradual change, as we have seen over many years previously, and yet this government has acted deliberately to stop the forward momentum, and worse, reverse it. You only need to read about sanctions on ESA claimants, disability hate crimes on the up, a callous test that finds even those dying in hospital beds unworthy of support.

    I don't know where this leaves any of us.

  15. all i can say sue is that i live just over the road to a private hospice full of people who over their lifetime like most mp's cared little for the likes of you and i but at the end of the day they end up down a dead end road going nowhere

    those who think ill of the sick and disabled have always ended down this road and always will do

    the only trouble is that they leave this world without ever saying sorry to those they've hurt along the way and leave all those sick and disabled left alive wondering what have i done so wrong to bring about so much hate

  16. I could not agree more with the sentiments expressed in this piece, Sue. Thank you for putting them so eloquently. I only hope that some of the nay-sayers read it and you don't end up simply preaching to the converted.

  17. Don't forget sick and disabled people come with their own political and religious beliefs and include a whole range of their own experiences and prejudices. We tend to assume that everyone affected by disability and illness is centre or left of centre politically and, of course, they are not. Nigel Farage is not immune from the possibility of an accident or illness leaving him long term sick and/or disabled. Also the same percentage of disabled people are susceptible to government and media brain washing as the rest of the population. Just because we are disabled does not necessarily mean we are sensible, kind and generous. It may be surprising to some, but disabled people can be cold, uncaring and prejudiced toward others. Hopefully the majority can see beyond a model of disability and/or sickness and judge whether it is truly inclusive and supportive of all states of being. In America the models, now adopted by governments, were designed to maximise profit.

  18. Dave Birdsall

    Well said Sue. I should be dead, according to specialists, when I didn't die it changed to, we will soon have you back to normal. Normal? Then the first five years was all about making me 'functional' again. 10 years and I'm still not 'functional' enough!

    Year 14 and still I. An overcome this with some more positive thinking. I have explained that I am not Jesus and therefor can not heal myself, I cannot replace eaten away bones. But in time I will be normal again. We are not just a collection of symptoms and signs that point the medical hierarchy to healing us. Disability is in the eye of the beholder, and the more idiots that poke themselves in the eye to try and find out what it's like to be blind, or wear masks over the eyes to simulate blindness makes me laugh.

    Even the good old wheelchair has had celebrities lining up to get some exposure by using a wheel chair all day. I find it all hilarious that these people feign comprehension but in reality it degrades. So I agree totally Sue, judgemental attitudes stinks, as if saying I'm more disabled than so and so is carries credibility. The only credibility everyone wants is respect, freedom to be, and not be abused.

    So we carry on and hopefully grow within ourselves the ability to judge less, to manipulate less and respect and love more. What other choices do we have. Cultural values that are harmful can be unlearned. But tolerance and respect are kidnapped at times in the world if disability. We either stand together for the simple dignity we deserve or we will surely fall down, be put down individually. I hope this makes sense. Morphing is kicking in so goodnight Sue and all who have commented. X

  19. I find this open discussion about the social model really useful. I have visible severe mobility problems which mean I am seen by others (whether or not they know me) as disabled. Yet even with the most perfect social environment, I would still be unable to engage fully in our society. My physical impairments (particularly the invisible ones) limit my capacity more than my perceived disability.

    When I was medically retired some years ago, I came from a professional background where the medical (psychiatric) model and social model were both seen as necessary components of a comprehensive theoretical understanding. While not everyone agreed with this, it was no longer contentious to utilise a biopsychosocial mode, rather it was essential!

    As I sought to come to terms with the huge changes in my life as a result of my physical impairments, I started reading around the politics of disability, the history of the disability movement etc. I was very surprised to discover that a progressive, radical position apparently required a total separation of social and medical models, with the latter seen as a reactionary position emanating from a repressive society. It also seemed that questioning this was in some way taboo.

    Without wishing to discount the central importance of the social model in advancing the disabled movement/life of/for disabled people, the social model alone did not and does not mirror my own experiences.

    It has always seemed that impairment is a sort of elephant in the room. I was very relieved when I came across the work of Tom Shakespeare, propounding a more inclusive model, allowing for both the importance of physical impairments and the important contribution of a medical model, as well as the social model of disability.

    I think that one of the (many) problems with changes to the assessment and categorisation used by DWP is a repressive use of the social model in a way that minimises the impact of impairment.

    There is no one unified community of any group. And that’s OK. Debate is essential and strongly held beliefs are good. But, as has been said above, divisive arguments get us nowhere, though undoubtedly please politicians of most parties. Divide and rule and all that…..

    1. As I said in my comment further up the thread: There is no important contribution of the medical model. The "medical model" is an unfortunate misnomer that those sociologists came up with and "the 'well it's their tough shit for having something wrong with them. We as a society aren't going to do anything to help them' model" would be a more appropriate name.

      You really think such an extremist libertarian philosophy is of use to anyone except non-disabled who don't want to pay tax?

  20. I hadn't previously heard about this conflict between two groups.

    All I would say is that before I became ill myself I lazily thought of people with disabilities as maybe someone in a wheelchair, or with a hearing aid, a guide dog... etc.

    After a few years of being sick I started wondering about myself. "Am I someone with a disability?" I went out looking for definitions of disability.

    The place I looked first was The World Health Organisation. And on reading their definition I thought "well, yes! I definitely fit there."

    Yet the government declares that those on ESA (the benefit I receive) will experience a benefit freeze while "disabled people are protected".

    By the WHO definition huge numbers of people on ESA will be people with disabilities (a recent issue of Private Eye pointed this out).

    I hope these hostilities between different groups will cease. I can think of a few disabilities that would be far more visible to the outside world and far more in line with people's stereotypical ideas of disability that I'd rather have than the illnesses and symptoms that I do experience. That said, perhaps if I were able to wish this into being then I may find I'd want to change back! But at least it's an open question to my mind.

  21. This debate is happening! Look at Tom Shakespeare and Carol Thomas, amongst others, who are trying to carve out a model which takes into account the experience of living with impairments of any sort. This debate seems very much 'us' vs 'them', which is understandable because people are so passionate, but it really doesn't need to be.

  22. I think part of the problem is this "one answer fits all" mentality. Ticking disabled on a box means you can be categorized, dealt with. Whereas to actually look deeper, at the illness, at the person and figuring out what that individual needs....

  23. brilliant piece with brilliant comments. Cannot find anything meaningfull to add.

  24. I'm really thrilled with the comments on this thread to be honest. I think it's a grown up, thoughtful debate and interesting that so many with physically apparent disabilities also feel they are disabled by other issues of ill health and that in many cases, they are more disabling than the visible issue.

    Thank you all.

  25. sickness and disablement are normally hidden from the public you don't go shouting your mouth off your ill after all but with any intelligence you can see straight off when someone is ill or disabled by the way they act or look

    and to say otherwise is just being offensive to them

  26. But wouldn't you say, your sand is quite controversial? I'm not sure. Your argumentation seems logical, but I am still having my doubts...