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Monday, 26 January 2015

Sickness and the Social Model of Disability



This is the first part in a series of blog posts that will explore the uneasy relationship between chronic illness and the social model of disability. From my perspective as a Sick person (more on that controversial word next time) I will explore why people with chronic illness often feel excluded from the Disability Rights Movement (DRM) that emerged out of the social model. But rather than reject the social model I’ll discuss how we, the Sick community, could claim it for ourselves and what a social model of chronic illness would look like.

The crucial distinction between impairment and disability lies at the heart of the revolutionary Social Model of Disability that emerged in the 1970s – the model that underpins the disability rights and independent living movements. To paraphrase it simply, impairment is loss of bodily function, whereas disability is disadvantage imposed upon people with impairments due to hostile social attitudes or inaccessible physical environments. 

So in an ideal world impairment does not automatically entail disability and disability can be eradicated through social change. The pursuit of this ideal through the disability rights and Independent Living movements has transformed the lives of many disabled people previously consigned to segregation and second class citizenship because of what society perceived as their biological misfortune. 

It is fair to say the Social Model has been most transformative for people whose impairment is most easily mediated by external factors such as social attitudes, technology or physical environments. However, it poses more of a problem for those for whom disadvantage is not, or not significantly, lessened by the removal of disability. To put it simply, people differ in the degree to which disability, rather than impairment, is the main source of their exclusion from society.
 
People with severe chronic illness will say it’s not the presence of stairs or lack of ramps or people’s ignorance and prejudice that prevents them going out and joining in with life. It’s the often invisible pain or exhaustion or other features of illness that trap them in their home or bed. We refer to ourselves as “Sick”, a term that the DRM finds problematic, even distasteful.

The emerging “Sick movement” and the DRMhave been at loggerheads recently, especially over the thorny issue of work. To put it simplistically: Sick people say  they can’t work chiefly because of their defectively-functioning bodies, and that employer attitudes and adaptations to work or workplace don’t make a significant enough difference to their employability. A recent account by Kaliya Franklin shows despite an ideal job with an all-accommodating employer, illness can make working impossible, or virtually. Crucially, it’s often the inability to think due to pain and exhaustion that can’t be mediated or overcome. 

The DRM has railed against this kind of message and it’s very easy to understand why. Disability Rights activists want to keep impairment and disability separate and pin their disadvantage on the social oppression that is disability, not individual biological impairment. Huge advances have been made in overcoming oppression and exclusion thanks to the Disability Discrimination Acts, Access to Work, Disability Living Allowance and the Independent Living Fund. The last three are currently threatened by cuts and closures. After decades of change for the better, our society is become more disabling according to leading campaigner and researcher, Jenny Morris. It is not the right time, then, to be diluting the politics of disability rights message. Not the right time to be pleading that, with all the best will in the world, some of us just can’t keep up.  To concede that bodies can be intractably disabling in their own right is to give further ground in this precarious terrain of disability rights. 

So the DRM has kept relatively quiet about the government’s vicious assault on incapacity benefits for those too ill to work and the devastation it has caused. And a grassroots opposition movement led chiefly by sick people has emerged independently of the DRM and often expresses a sense of abandonment and exclusion from it. The fact that our exclusion from work and society stems more from our impairment than from externally imposed disability makes us feel we’re not proper Disabled People and that the social model of disability is not for us. 

Why does this matter?

 

Our marginalisation with the DRM matters because, as sick people, we are bombarded with hostile attitudes from all around us. More than ever before, people impaired by illness are depicted as morally weak, lazy, malingering, workshy, and seeking excuses to not pull our weight. But we are less well organised to resist these hostile attitudes than perhaps any other impairment group. 

And when we don’t clearly identify this social dimension of our disadvantage we internalise the hostility into shame and self-doubt[1] and can end up more excluded and marginalised than we need to be. Internalising hostile attitudes means we have less self-belief; less faith in our gifts; less conviction of our right to develop our potential, contribute to society and be valued for who and what we are. We are more likely to accept our marginalisation as inevitable.

Our form of impairment usually less tangible and measurable than those who are visibly different. Therefore we often fail at the gateway of policies targeting “disabled people” that demand hard evidence of impairment to qualify for any small recompense for disadvantage. The result is that, too often, we would rather not ask for something like a Blue Badge, a PIP award or a personal budget that might give us a precious window of freedom and opportunity, because the risk of assault to our personal integrity in doing so is too high.

Sick people are disabled by the benefits regime. Not because it traps us in dependency, as the Right loves to claim, but because its over-zealous gatekeeping slowly and insidiously convinces us that we are not Proper Disabled People and don’t deserve to live our lives to the full. Now, under the so-called welfare reforms, we are not even sure we deserve to live at all.

Disability is present in all forms of impairment; there is always a social dimension to any illness or health condition. It can be harder to pinpoint and to resist for us than for people with classic impairment such as spinal injury. In fact, identifying the social dimensions of illness sometimes involves turning received wisdom of Social Model on its head. This is what I’ll tackle next.

Watch this space!

Thanks to Dr Simon Duffy for prompting me to write about this, and to Jenny Morris and Liz Crow for support and critique.


[1] Donogue P. and Siegel, M. (1992) Sick and Tired of Feeling Sick and Tired.

52 comments:

  1. I joined a disabled drivers group but was made to feel uncomfortable and out-of-place as a non-wheelchair user. I felt I was viewed as not 'properly disabled'.

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  2. A huge problem, and degree of confusion, and cause of many debates, is the Government inclusion of disability into sickness benefits. Not just the inclusion, but the confusion and conflation.
    ESA is for people too sick to work. Its the ONLY sickness benefit available, and is available for the employed, unemployed, self-employed. Its not a disability benefit.
    What is odd about ESA though is its criteria, which are clearly tests of physical ability, and mental capacity, attributes that when they are lacking are usually due to impairment, a reduction or lack of function.
    Illness can lead to disability, it can render people so debilitated that they are seriously impaired. However that is not the debate.
    The end point of this debate is that purely functionally disabled people should not qualify for a sickness benefit. Neither should they comment or campaign either for or against a sickness benefit. And they certainly shouldnt apply for one.
    But most rational people agree that sickness and disability dont exist in isolation, they are more often found together, impacting on each other.
    Sadly the Work Capability Assessment for ESA, even with the 29 and 35 regs, can fail the very sick, for whom work, or seeking work, would endanger their health.
    Its time the sick reclaimed their sickness benefit, and the healthy but impaired went back to their fight to make the world of work accessible.
    And for the vast group that straddles both camps, good luck, because although you may want to campaign for both, the extremists and single issue activists will make your life hell, and the benefits system may not even recognise you.

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  3. I've just written about this:
    http://voxpoliticalonline.com/2015/01/20/the-influence-of-private-insurance-on-uk-welfare-reforms-mo-stewart/

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    1. We really need longitudinal studies conducted into the feasibility of long term ill people getting and keeping work. I think it's unrealistic unless chronic pain and degenerative illness are taken seriously in the debate. You make an excellent point that the studies politicians relied upon are self referential, they're not peer reviewed at all. I'm going to raise this with my (Labour) MP before the General Election. Thanks to your research I've got some concrete criticism to go in with but I'm not sure how well it will go down. Here's the thing, is it realistic to get hundreds of thousands of people with long term illness back into work in a shattered jobs market? At least Incapacity Benefit tried to assess functional ability. The introduction of the WCA has put the disability rights movement back because it blames ill AND disabled people for not being economically self sufficient. And this in itself is an awful, demeaning form of discrimination which both main political parties seem to think is acceptable.

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    2. There isn't time for longitudinal studies, to prove what?
      A longitudinal study will demonstrate what is already known, which is a long-term permanent illness can't be removed because the budget needs to be reduced.
      Long-term profound illness is, by definition, a variable.
      As demonstrated by Kaliya, it's fine to work when enjoying an all too rare 'good' day or 'better' week, which will be limited and can't be guaranteed.
      This country is perilously close to the mind set of 1930s Germany, where chronically sick and disabled people, and the elderly, were considered to be a burden on the state.

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    3. Agreed Mo. This is about a culture's lack of accommodation of one's impairment/s.

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    4. I agree 100% Mo and Angela. The only reason I suggest a long term study is because politicians don't believe in physical illness, they really think conventional employment is the answer to the 2 million or so people on sickness benefits. I think the IB rules should be brought back, and I think Labour should prepared to denounce this fake research: http://www.publications.parliament.uk/pa/cm200203/cmselect/cmworpen/401/3021203.htm
      Especially paragraph 25 where Unum equate illness with ordinary unemployment by stealth. Politicians are out of touch with reality, and that is the only reason I recommended a study that isn't really needed. I'm commenting anonymously because I know (from talking to MPs) that they hate being challenged on the subjects mentioned in this blog and in the comments, no matter how politely you raise the topics being discussed. This blog is useful though, imagine if we could all meet and have a televised debate like this in Parliament.

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  4. Many congrats on having the courage to write this Catherine and I am so sorry to learn of Kaliya's struggle with her job, but not at all surprised. I seem to go round in circles attempting to explain that a chronic illness can cause a disability but that there is a huge difference between a physical impairment and an illness that makes you impaired.
    Certainly, the ongoing vitriol from the DWP Ministers continue with the rhetoric that work is good for you but they mean paid employment. The millions of people working in the voluntary sector who help to keep this country alive are disregarded and I rarely hear Ministers talking about anyone with profound illness as demonstrated by the dangerous WCA, that fails to even consider disagnosis or prognosis.

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  5. A very important topic on which I am currently writing a chapter to be included in a an anthology geared at HR-programmes/students, the labour market in general, and politicians. Are you familiar with the work of ME-sufferer Susan Wendell? She argues that discourses about disability that exclude women with chronic illness are incomplete and therefore flawed. I am delighted to find more sufferers like yourself who critically write about the complexities of chronic illness and exclusion. The ocial model has been hijacked and is now abused to play into the hands of the psychogenically inspired school of thought (if it can be called that, psychogenic 'explanations' and interpretation appear to be the norm). You are either not mentally well enough to 'want' to participate (and as you and others have pointed out participation is only identified as such when you do paid work) or you should sit in a wheelchair with a limb missing. All else is considered 'laziness' or some other character flaw. I don't think the social model is inherently that exclusionary. Angela Kennedy (are you familiar with her work?) has a lot to say on the topic, too. I look very much forward to reading your next post. On another note, for some reason, I don't succeed in uploading this comment under our WordPress name, so I appear as 'anonymous', but here's the link to our blog. Best wishes, Claudia http://uttingwolffspouts.com/

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    1. You're right Claudia. I don't want to imply that the Social Model is inherently exclusionary. It has been hijacked by "welfare reformists" to suit their ideology. Nor do I think the DRM is inherently exclusionary either. Look forward to checking out your blog

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    2. Inspired by your latest blog post Catherine, we've continued the discussion on our own blog http://uttingwolffspouts.com/ and linked to your page, Claudia.

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  6. Thank you for raising this very important topic. Sick and disabled people come in a wide spectrum and the two wings should not be fighting like this. it is a waste of time and energy.

    But worse than that the whole welfare reform programme was designed for one wing. So the fight back for the other wing is a matter of survival.

    No wonder the public don't support us when they get such confused messages.

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    1. Well said...much better than my waffle!

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    2. It's me - Frances - but I can't get in as me

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  7. This is extremely well written and I agree with the thrust of your post - I'm very much looking forward to your next piece - but... I do think there's a danger of making a straw man out of the disability rights movement. This is my home, this is where I have belonged for ten years, yet I'm someone with chronic debilitating illness who can't work. In fact, my friends and contacts within the movement are made up of either people with chronic illness or with injuries or congenital impairments some might regard as "classic impairment" but come with debilitating symptoms and complications, chronic pain and so forth.

    I know there have been folks who have placed themselves as spokespeople for disabled people - especially sportspeople or dreadful "motivational" figures beloved of government - who spout this idea that removing environmental barriers would remove all the limitations we have. But as a movement? I really don't think that represents what we're about and - as you quite rightly imply - that's not what the social model means. Meanwhile, the DPAC crowd are very firmly disability rights, but exist to fight welfare reform, access to work and social care cuts. Everyone around me cares about welfare; even those in work right now recognise their vulnerability.

    I'm very sorry my positive experience isn't universal. It is a terrible thing to be alienated by folk you might expect to be your natural allies - I know that feeling well from other contexts.

    I have struggled to put this into the right words because I really don't want to argue nor do I want to derail your exploration you've begun here, which is both interesting and very important. If you did provide examples of what you describe, I might well think, "Huh, that person doesn't speak for us." and anyway, my opinion doesn't matter - you feel excluded for a good reason and I'm very sorry for it.

    I only wanted to put a word along the lines that not all of us in the disability rights movement are nearly so dismissive of what it is to be sick, or subscribe to a version of the social model that forgets or discredits sick people. Partly because a great number of us are sick ourselves.

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    1. Guilty as charged! You're right, I realise I do sometimes create a straw man out of the DRM, when what I'm referring to really is big, professionally run charities who campaign under the social model, not the grassroots DRM. This conflation in my head is probably due to my own acute isolation historically as someone who's had severe ME (now moderate) for over 20 years so hasn't been able to participate in any movement whatsoever til I joined twitter a couple of years ago. Thanks for joining in discussion and putting me straight

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    2. I do have to say that, as an 'academic' and member of the disability rights movement for a long time, when my daughter became ill and I joined the ME community rights struggle in 2003, I unfortunately found that too many disability/impairment orgs did NOT want to be associated with us, including AIDS organisations, because they saw ME as not quite as real or disabling. This also included disability journals, who promoted the psychogenic explanation sometimes. I have also seen at least one prominent disabled academic construct ME as a 'bandwagon illness'. I was quite shocked at the time with the lack of solidarity. That is changing though. Still, a problem in relationships between impairment groups has been identified in the literature. I've just read quite a paper by Mark Deal in Disability Studies Journal on tendencies towards making 'hierarchies of impairments' which was interesting. I do think the Disability movement can and should be able to sustain a discussion on how to ensure inclusion and solidarity.

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  8. Very much appreciate the opportunity to discuss this issue, which has been an important one for many years. My own position is that psychogenic explanations for physical impairments (as detailed in my book 'Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses'), if examined using an explanatory social model of disability, can be said to be highly 'dis-abling'. This is because they feed into, indeed promote, disability denial (although primarily they promote impairment denial, though disability denial is both a direct and indirect process related to this). Psychogenic dismissal of impairments has fed into neoliberal ideologies and anxieties about people treading 'heavily' on the state. Ivan Emke is very good on this. My book found doctors' reasoning to be quite astonishing, in how easily and uncritically they take up psychogenic dismissal as a means of 'diagnosis'. Furthermore, the promotion of such, by doctors, especially but not exclusively psychiatrists, and their anxieties about state benefits underpins psychogenic dismissal. I would argue that psychogenic dismissal of physical impairments was historically (though relatively recent history) piloted as a policy on M.E. sufferers. Its success enabled it to be rolled out to people with other impairments, and this is what we are seeing in how dis-abled people are being treated by the state (including the media) today. Part of that success is unfortunately due to the inability of the disability movement at large to defend one of its own - the M.E. sufferer and others affected by difficult-to-diagnose impairments, in the 1980's and 1990's. I personally think we need not to make the same mistake again, so yes, issues affecting chronic illness sufferers, including the ones difficult to diagnose, must DEFINITELY be supported by the Disability Rights movement at large. I'd echo Claudia's recommendation of Susan Wendell, and indeed I'd recommend Claudia's blog as well.

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    1. Brilliantly put... thank you for joining in discussion. Exactly what I want to say: that distorted Biopsychosocial model in recent policy making is exactly the hostile attitudes that DISABLE people with chronic illness. So to truly include Sick People in the Social Model psychogenic thinking must be resisted, both among policy makers and wider society. Look forward to reading your book

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    2. Thank you very much for bringing up the 'biopsychosocial model', which, was you say, is very much a distorted model, used in state policy and coined by doctors and other health professionals, that is NOT related to the social model of disability, engendered by disabled people themselves. Indeed the two 'models' are often in conflict for exactly the reasons you've said. Because of our conversation here, it has JUST occurred to me that there may well have been some linguistic 'hijacking' of the term 'social model' by those proponents of the 'biopsychosocial model', and that this has caused problems with how the social model is being perceived!

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    3. It was hijacked by Maria Miller as a justification for removing DLA and replacing with PIP. The Government "version" of the social model is that there are now very few barriers to participation in society, because the world is now more disability friendly. Effectively their "social model" variant is based on ramps and hearing loops and one space for a wheelchair on a bus.
      Further to that McVey has trumpeted loudly about things like apps that help blind people, diminishing the problems of being severely visually impaired or blind down to a minor inconvenience that can be managed with an app. Other disabilities have similarly been diminished, and then been included in criteria for PIP, as a way of denying the benefit.
      Interestingly the more "curable" or manageable conditions have been supported by PIP, suggesting that time limiting and then benefit denial will keep those numbers low.
      Its an abuse of the social model, but that risk was always there - however it takes a real bastard to decide to use as a weapon the biggest tool disabled people had in their tool box.

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    4. Thank you Hosslyass. You've hit the nail on the head here. This is also related to the 'biopsychosocial approach' as a way of hijacking the social model. I think disabled people have to 'take the social model back', reclaim it in its emancipatory form from the abuse it has suffered.

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  9. One thing I would add is that a social model of disability can and does incorporate understanding of impairment apart from those social structures that give rise to jeopardies in dis-abled people's lives. It can address how impairment affects one's life, but also how lack of accommodation of impairment is a social issue (or sociological), i.e. caused by social structures. I feel a lot of critiques of the 'social model' are straw men, not deliberate, but not taking into account the fact that 'impairment', and being 'dis-abled' by social structures and the way societies treat you for having that impairment, have both been discussed extensively in the disability movement as part of an explanatory 'social model' of disability.

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  10. To echo Lilly above, thank you for raising this - and it has provoked me it thinking about once more.

    Maybe the answer doesn't lie down the path of Sickness vs Disability or Medical vs Social model

    Maybe the resolution of this it is to extend the social model to incorporate sickness and chronic and fatigue based conditions!

    Back in the 70s, when the social model was developed there was little recognition of fatigue based conditions and how it impacted on people

    Perhaps its time to extend the social model to incorporate that?

    Perhaps to say that western society is based on 9-5 Monday to Friday with free time at evenings and weekends and this simply does not reflect how a growing number of people interact with the world due to fatigue and fluctuating conditions and fluctuating mental health conditions

    The Social Model, if it has a weakness is that it is based around steady state impairments vs society's lack of recognition of them

    Perhaps we need a social Model mk II - which recognising that impairments can be dynamic and fluctuating and requires that society changes its approach to fixed times and consistency in people's impairments

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  11. Of course, the difficulty is that this is not limited to sick people with an impairment. The problem with the common knowledge versus the official definition is that the lay public don't know any of this. No-one who sees me for the first time thinks I have an 'impairment'. People think I have a disability and the vast majority haven't a clue what the social model is.

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    1. Yes, that is a massive problem. I think it's part of a general state-led 'muddying of waters' whereby clarity is obscured by rhetoric. People don't know about the low rate of disability related benefit fraud either, for that reason. There has been a massive backlash against the disabled rights movement by neoliberal governments, IMO, so that it's much harder to get information like this out.

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  12. More critiques and anecdotal experiences, of applying the social model, which seems to have totally replaced the medical model, to all, are desperately needed. The use of one model is problematic. Also, creating a model that might be deemed more inclusive and sometimes useful, but then others using it in a negative way to deny impairments/limitations, disability and or illness/symptoms highlights one of the problems with taking something academic, applying it to all and ignoring the critics and people it lets down.

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  13. Bob is right - the social model isn't wrong - how could it be when all it says is that the way sick and disabled people can function in society is a function of society. It's a truism.

    Bob is also right that the social model was developed with a very limited set of people in mind. It examined the barriers society put up for these people and found ways to get the barriers adapted and changed. People were happy with that. It solved problems for these people.

    But now Society in the Manifestation of the Government have decided that these particular adaptations suit every one who is sick or disabled. They have extended the same solution across the entire spectrum. Other people with different barriers that have not even been named let alone addressed are now being sanctioned, time limited and means tested - the assumption being that they are on their way to work like the original subset of people.

    This is a perverse extension of the original model.

    The Social Model doesn't need to be abandoned - it needs to be extended more intelligently and sensitively to meet the needs of all other sick and disabled people.

    So far many people wedded to the original Social Model have balked at this extension. They don't want to extend the model to other people because it requires thinking outside the simple Social Model box. So they prefer to say that these people don't exist. That's called denial.

    When I was a physicist I got used to the simple models of light and relativity and then the extended models that came later when it became clear that the world was actually more complicated than first understood and the model had to be extended and that the original model was just a subset of the advanced model. And I think this needs to happen to the Social Model of Disability. It needs to be extended past its simple form that caters for a subset of people and developed in to a more general model that caters for every one.

    That is not denying the simple form of the model but moving on to include more people in a more general model.

    Personally I'm not sure a competitive labour market is going to adapt to people who may do less work with expensive support needs. To me that seems the opposite of a market. But them I'm not a great fan of markets. Massive interventions would be needed like the interventions that included women in the workforce (at great cost to the state and to the employers in maternity leave and childcare provision for starters). It's not impossible if society really wants to do it and pay for it but it will cost someone a lot of money and that isn't on anyone's current agenda.

    Society is responsible for choosing the competitive labour market. Society runs paid work with a competitive labour market that recruits the person who will do the most work for the least money. So the Social Model says - society runs work like this - so how does society plan to include people who may do less work and may cost a great deal of money in support needs. The Social Model would say - does society want to adapt it's labour market for these people. Personally I don't think it does. Not to the point where it costs more money than it saves. That's not contributing. It's costing more money.

    But either way it isn't fair to force sick and disabled people in to a market that hasn't begun to think about how it wants to address this problem.

    Perhaps society and the people themselves will come up with other solutions that don't involve the world of work exclusively. It's our society and we can run it any way we like. And there are so many good things outside the world of work. How about extending thinking in that direction.


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  14. Hi Catherine (part 2)

    "The emerging “Sick movement” and the DRM have been at loggerheads recently, especially over the thorny issue of work." This is news to me! Can you please provide evidence of or more information about this conflict? I consider DPAC to be a great embodiment of the Social Model of Disability and it has been at the spearhead of the campaign to ensure benefits are paid to sick and disabled people who are unable to work. How has the "loggerheads" manifested itself?

    " ... the DRM has kept relatively quiet about the government’s vicious assault on incapacity benefits for those too ill to work and the devastation it has caused." I consider that "The DRM" is not one corporate body but an amalgam of, often disparate, groups of people who identify as disabled people and use it as a political entity. As such, the DRM is never quiet but different people and different groups have different agendas and make different noises. DPAC, Black Triangle and ILF Users have been at the forefront of the challenge on cuts to incapacity benefits. Other groups, such as Transport for All, have been vocal and noisy regarding cuts to transport benefits. Of course, muddying the water are organisations well-entrenched in the Medical and Charity Model of Disability, such as The Disability Action Alliance and Scope. They undermine the Social Model and the achievements made by disability activists over the years, but they should not be identified as being part of the DRM, surely?

    "Our marginalisation with the DRM matters because, as sick people, we are bombarded with hostile attitudes from all around us." Again, I'd welcome the chance to examine evidence of these widespread situations where sick people have been marginalised by the disability rights movement. (And then I'd take the opportunity to challenge their oppressive behaviour and attitudes). But, to date, I have encountered no such marginalisation or hostile attitude within the DRM.

    Granted, I've met some oddballs during my time in the DRM. On a few rare occasions I've gained the impression from one or two people that they are intolerant of my being in chronic pain (that's OK, I'm intolerant of it too!) Others want to play the Hierachy & Stigma Game but I refuse to stoop to their level. These people want to play games and they lack empathy. But I don't see these oddballs as being representative of - or speaking on behalf of - the disability rights movement.

    If you have encountered intolerance and discrimination within the DRM then I, and I'm sure many other disabled people, would want to hear about it so we can support you and challenge unacceptable behaviour whenever it arises.

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    1. Hi JLT, sorry not to reply earlier to your very good questions. For blog posts where Sick people defend the fact they can't work see http://loopys-rollingwiththepunches.blogspot.co.uk/2013/06/sick-not-lazy-personal-story.html> and where a proponent of the DRM says Sick people should fight for the right to work see Neil Crowther's blog (sorry can't find the link to that particular post).
      I take your point about DPAC who campaign both under the social model and against welfare reforms. On reflection my choice of words is wrong: where I talk about the DRM what I really mean is the Disability Rights Establishment - the charities who engage in policy consultation with gov, rather than direct action like DPAC. So when I say Sick people are marginalised I don't mean at all by the kinds of grassroots movements you mention. I mean at policy making level by the people (often not disabled themselves) who represent "us" to government. There is no organisation comparable to Mind, Scope. Mencap etc, that represents the needs and rights of Sick people, ie people whose barriers to work are fatigue, pain, nausea etc rather than static impairments. Within pan-disability charities Sick people are an afterthought. More on this another time! So sorry for my mix up of terms - the DRM as you say is not one group but a fluid movement. The "establishment" are those who represent us at policy making level, and they are really the subject of my critique.

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  15. Hi Catherine (part 1)

    You write: "From my perspective as a Sick person ... I will explore why people with chronic illness often feel excluded from the Disability Rights Movement (DRM) that emerged out of the social model."

    I appreciate that you're writing and exploring this subject from - in part - a personal perspective as a sick person. I'm also sick, with a fluctuating but primarily debilitating chronic condition that went undiagnosed for most of my life. My experience of the disability rights movement has been quite different to yours; I've found it embracing, empowering and not at all discriminatory. Like Goldfish, my friends and contacts within the disability rights movement are made up of either people with chronic illness or with "classic" injuries/impairments but come with debilitating symptoms and complications, chronic pain etc.

    I appreciate that your personal experience may well be different to mine but I wonder on what basis you state that: "people with chronic illness OFTEN feel excluded from the Disability Rights Movement"? How many people and with what level of frequency, I wonder?

    You write: "We refer to ourselves as “Sick”, a term that the DRM finds problematic, even distasteful." I've been involved in the disability rights movement for over 15 years and I have never encountered this issue, either as a problem or distaste. I'm sorry, you have obviously encountered that, to come to such a conclusion. But do you have evidence that indicates that your experience is widespread and consistent with that of other sick people in the DRM, or is it a couple of isolated incidents?

    continued ...

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    1. Hi again,
      So coming back to the DRM - at grassroots level I haven't found it not to be embracing. It's just that, having had a very severe form of ME, I simply have been literally unable to access the physical spaces of meetings etc. I wanted to join a local branch of DPAC recently but haven't been able to get to meetings. On the subject of the rejection of the term "sick", this again has come from DR organisations who do policy work in the context of my report into ESA. I don't want to name names here but it's something I'll be writing more about.

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  16. Hi Catherine (part 2)

    You write: "The emerging “Sick movement” and the DRM have been at loggerheads recently, especially over the thorny issue of work." This is news to me! Can you please provide evidence of or more information about this conflict? I consider DPAC to be a great embodiment of the Social Model of Disability and it has been at the spearhead of the campaign to ensure benefits are paid to sick and disabled people who are unable to work. How has the "loggerheads" manifested itself?

    " ... the DRM has kept relatively quiet about the government’s vicious assault on incapacity benefits for those too ill to work and the devastation it has caused." I consider that "The DRM" is not one corporate body but an amalgam of, often disparate, groups of people who identify as disabled people and use it as a political entity. As such, the DRM is never quiet but different people and different groups have different agendas and make different noises. DPAC, Black Triangle and ILF Users have been at the forefront of the challenge on cuts to incapacity benefits. Other groups, such as Transport for All, have been vocal and noisy regarding cuts to transport benefits. Of course, muddying the water are organisations well-entrenched in the Medical and Charity Model of Disability, such as The Disability Action Alliance and Scope. They undermine the Social Model and the achievements made by disability activists over the years, but they should not be identified as being part of the DRM, surely?

    "Our marginalisation with the DRM matters because, as sick people, we are bombarded with hostile attitudes from all around us." Again, I'd welcome the chance to examine evidence of these widespread situations where sick people have been marginalised by the disability rights movement. (And then I'd take the opportunity to challenge their oppressive behaviour and attitudes). But, to date, I have encountered no such marginalisation or hostile attitude within the DRM.

    Granted, I've met some oddballs during my time in the DRM. On a few rare occasions I've gained the impression from one or two people that they are intolerant of my being in chronic pain (that's OK, I'm intolerant of it too!) Others want to play the Hierachy & Stigma Game but I refuse to stoop to their level. These people want to play games and they lack empathy. But I don't see these oddballs as being representative of - or speaking on behalf of - the disability rights movement.

    If you have encountered intolerance and discrimination within the DRM then I, and I'm sure many other disabled people, would want to hear about it so we can support you and challenge unacceptable behaviour whenever it arises.

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  17. This is a fascinating debate, and I believe there are ways in which the disability movement (as I find it more often termed) frequently appear not to acknowledge the reality of people's lives, when they are constrained by ill-health, as opposed to the lives of people who are "disabled but well". The first, and perhaps less important, is the issue of terminology. People who align themselves with the disability movement do not like the term "sick", and always ask that the phrase "sick and disabled people" be reworded to read "disabled people and people with long term health conditions". The problem with this definition is that it is quite possible to have a long term health condition, such as diabetes, which is diagnosed but doesn't have a significantly debilitating impact on daily life. On the other hand, use of the word "sick" does give the impression of someone whose condition has a significantly debilitating impact on their daily life.

    However, there is one respect in which the words used matter a lot. In the mid-20th century (1951 to be precise), the sociologist Talcott Parsons described "the sick role", by which he meant the way in which, in a capitalist society, "sick" people are supposed to behave - by following medical advice and getting well again as soon as possible - and the way in which which the rest of us should make allowances and reduce/suspend expectations of the sick person. Welfare policy hasn't missed a trick in using this kind of concept to cast doubt on the reality of chronic ill-health (which doesn't fit with the "sick role" concept anyway), so there is some danger in using the word "sick"...

    However, much more important is the mismatch between the disability movement's correct focus on rights and equality, including in relation to undertaking meaningful paid work, and the reality for many with chronic illnesses who would love to work but just can't - due to pain, the impact of pain medications, fatigue etc. It is here where the welfare policy wonks have done their worst, hijacking the social model to try to demonstrate that if only a few barriers were removed, disabled people (including sick people) can work (and come off benefits, of course!). I believe wholeheartedly in the social model of disability and I agree with other commenters, who have made the point that the true social model, used in a more nuanced, rather than simplistic way, taking account of "impairment effects" (ie symptoms), can be used by people with chronic illnesses.

    The right to work, under UNCRPD, and equality in the labour market are not the same as having an obligation to work if paid work is not possible or desirable for due to ill health or other reasons. As I said yesterday, when on a panel at Disability Rights UK debating employment support, a right to work is certainly very different from welfare to work policies. Sadly, because people who are sick have to prove they can't work in order to get money to live, and are sanctioned if they don't undertake "work related activity" or take the first job that comes along, regardless of how unsuitable, many have understandably come to see work as something punitive, to be avoided, rather than an opportunity to be welcomed. Without the threat of sanctions and destitution, and in a more healthy/functional labour market, we could all safely be more positive about work, and choosing suitable work, but realistic about the fact that some people are not well enough to work, at least for a period of their lives.

    I hope that contributes some kind of sense!!

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    1. Thanks Jane, yes, I know that the term "sick" is rejected by the DM because of the stigma attached to it, but personally I feel it's time to claim it for ourselves in the way the gay community claims the term "Queer". Sick is a label we have identified under on social media. Granted, it's hard to feel pride about being Sick as the gay community does, but it does denote a community of shared values and experience and I feel the DM should respect that being Sick is akin to being Deaf with a capital D. More on this another time...

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  18. Our society runs a competitive labour market. That is our choice. So the social model in our society looks for inclusion of sick and disabled people in that market. And this is the discussion we are having.

    But society could run on different lines. The Green party go for a Citizen's Income for all - no questions asked. That would really suit sick and disabled people. They would have the choice then extended to all citizens to do some work to top up their income or contribute to society in other meaningful ways.

    This is a different discussion. Change society before you try and adapt to it.

    At the moment the Social Model has a competitive labour market to deal with - but that isn't the only possible way to run society.

    Frances

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    1. I would definitely disagree that a competitive labour market society is 'our choice'. It certainly isn't mine! Though we are in the grip of such a thing, yes. But yes, society does not have to be obsessed with making people aspire to function as cheap labour. I think it's the same discussion, frankly.

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    2. I'm just saying that the Social Model says that society produces the barriers to inclusion and that society has to change them.
      The society we live in embraces a competitive labour market. It is the current choice of society. I wouldn't choose to run society like that either. But that is where we are.

      I would see a competitive labour market that chooses the worker who will produce the most work for the least money as a barrier to inclusion for sick and disabled people. But then I am prepared to admit that sickness and possibly some disability will mean that a worker produces less at more cost. I am not in denial about that.

      So you can change society not to run with a competitive labour market or you can accept the market and work round it with subsidies or ethical marketing. But you have to look at what you are dealing with objectively to find solutions.

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  19. I really welcome all the high quality and thought-provoking comments and discussions here. I've had a crash so can't reply immediately as I would like to but I will do asap so please come back and visit! Thank you

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  20. Thanks for the participants in this discussion, meanwhile I live in fear of a review of my DLA that may lead to me being denied PIP. I will lose my car, this will lead to me being unable to do all the things that I currently do to help me to have a more balanced life. None of those things will I be able to do if I lose my car. My life would become so restricted, I do not know if I will be able to cope with that. I am terrified.

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  21. Huge thanks for writing this - a long overdue discussion! Look forward to more!

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  22. This is a well constructed piece very thought provoking

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  23. I think this article makes a good point. As someone who has long standing mental health problems and a sufferer of chronic pain I would describe myself as 'sick' rather than 'disabled'.

    Unfortunately all DRM activity seems to be focused on those with *obvious* physical impairments that the general public can easily understand (at a basic level). Those of us with invisible problems; chronic pain, fatigue, mental problems, etc, ARE often made to feel like scroungers and malingerers, even by those who claim to understand and offer help.

    For some of us it IS the illness that causes the disability. No amount of change in social attitude or improvements to the work environment is going to make my pain go away.

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  24. WE have an ideal opportunity in the run up to the election to expose the reality that the DWP will not acknowledge, which is the fact that chronically ill people are not well enough to go to work, and for many of us it will last a lifetime.

    As our dear friend Kaliya has discovered, her diagnosis never was going to permit her to regularly work in paid employment, with all that that commitment implies, regardless of how much she wanted to 'work' or how much she enjoyed the job. She's too ill.

    This is something I have tried and failed to expose for years in that it is the illness that gives many their disability and it's something Freud has yet to comprehend.... His idea of a 'fluctuating condition' is that people can be in work for 6 months and on benefit for 6 months, with no comprehension that a fluctuating condition can and does fluctuate from hour to hour, day to day and week to week and, for most of use, we can't predict when we will be having that illusive 'good day'.

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  25. Thank you so much. I don't think I've ever agreed so much with anything in my whole life - And this is the first time that I've even heard of the concept of "Sick rights", despite having been active and shouty about disability rights for a long time, and also baffled as to why everyone else seemed happy with the social model and why I was a fringe voice saying "This doesn't fit me!". This probably sums up just how marginalised even within disability rights those of us with what I've always thought of as identity-wrecking illnesses are.

    Keep on with the good fight, I've got nothing to add other than that I'm so glad that you've written this and I now feel measurably less alone.

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  26. You aren't alone honey. We are never far away.

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  27. another great post! sick is not the same as disabled! also, misopathy is not the same as ableism! my modest contributions:

    http://thekafkapandemic.blogspot.com/2012/04/misopathy.html

    http://thekafkapandemic.blogspot.com/2013/10/why-some-diseases-are-wronged.html

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  28. I like your analysis of infrequently-discussed topics.

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  29. A long term disability insurance policy works by stepping in after the benefits of the short term disability insurance policy cease. A portion of the remuneration keeps coming in and the benefits/amounts are adjusted to face the effects of inflation.
    his explanation

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