Age : 10 - 16
Various GPs :
"It's all in your head, you're "just" Depressed/Anorexic/Attention Seeking".
Oh. [long pause] Really? Only my tummy hurts and I keep being sick?
"Well, what's going on at Home/School/With Friends?"
Erm. Not much. [Not sure what the answer should be]
"Take paracetamol and suck on a mint."
Oh. [long pause] OK.
************
It turns out of course, that it wasn't all in my head. It was all in my genes and my blood and my immune system and my cells. When I was diagnosed in 1989, I'd had no investigations at all for 6 years. I looked skeletal, I'd spent 6 years calling out of hours doctors, writhing in pain, crumpling at school, vomiting at parties (without alcohol!!) and learning the very definition of boredom at A&E.
Age : 16 - 27
Reflexologist/Accupuncturist/Hypnotist/Counsellor/Faith Healer/Homeopath
"It's all in your head your chakras/energies/balance/thinking are wrong. Be calmer, be stronger, have more faith, let go of the past, you'll be fine."
Oh. [long pause] Really? Only my tummy hurts and I keep being sick?
"Well, what's going on at Home/Work/With Friends?"
Erm. Not much. [Not sure what the answer should be]
"Take emu oil and develop your aura."
Oh. [long pause] OK.
*************
So I ignored the physical totally. I believed them all. I went to college against the advice of my teachers, I went to uni against the advice of my doctors, I applied for the Erasmus scheme and spent 3 months vomiting my way around Italy, I graduated, I fell in love, I travelled via the pharmacies of Europe, crossed America on the back of a motorbike, fertilising cacti with yet more "all in my head" vomit for over 3,500 miles.
I worked. High powered jobs, calm, laid back jobs, part-time jobs, late shifts, bar work, singing in clubs, teaching. Trouble is I obviously just didn't try hard enough. No matter how many times I told myself it was "all in my head" my bowels disagreed.
"No!" They griped back at me. "It's in here! Oooh-oooh! Look! Down here!"
***************
Age : 27 - 38
DWP/Government/Media
"It's all in your head, you're "just" a victim, just not trying hard enough. A parasite, lazy, feckless, irresponsible."
Oh. [long pause] Really? Only my tummy hurts and I keep being sick?
"Well, what's going on at Home/With Friends?"
Erm. Not much. [Not sure what the answer should be]
"Get a job, you'll feel much better"
Oh. [Long Pause] No.
You see I've been there, done all that, tried everything I could think of, fought, scrapped, battled, stubbornly rejected the word "can't" adopted your "social-model" and found that it's an absolute heap of steaming manure.
It's not "all in our heads." Positive thinking and courage are certainly important, but if they could cure us all no-one would ever die would they?
Doing everything you can is responsible. Doing more than you should is stupid.
Trying your best is vital, every single day, but magic wands are not yet widely available.
Being calm and zen is desirable, but hard to maintain on an hourly basis in any life.
Living on vitamins, lipids and raw carrots is theoretically possible, but relatively pointless.
The "Disability Deniers" can ignore evidence if they wish, but do you think we might keep them away from the DWP? Only it's a bit like letting creationalists take charge of religious education. Or letting climate change deniers legislate on the environment. The put-your-fingers-in-your-ears-shouting-la-la-la method of governance is not usually known for it's satisfactory outcomes.
Lol very good, I'm afraid Sue with my Ulcerative Colitis I accepted no nonesense from any over paid "experts". The first doctor/GP I dealt with in the UK after an excellent service by doctors in South Korea (paid much less than the ones over here)decided to treat me as though i had done something wrong.
ReplyDeleteWhen I asked how I was to work (I was employed and living on my own means)because I love working and could not get to/from work without losing control of my bowels and bleeding and was afraid of such an embarresment, I was given no advice at all. It had already been assumed I was on the dole lol.
When I asked whose advice i should seek I was directed to a number of places none of which were a job center to talk about ESA/Disability Living allowance.
The final port of call was a CAB who informed me that the doctor did indeed (through training) know where to send me as was merely making a political as opposed to a professional decision.
I'm afraid I lost my temper not because of how I was treated, but because I realised my constituents, the people I represent would be treated in a similar fashion, i had very serious words with the Practice manager and am glad to report I have never seen the GP ever again.
I am still not in receipt of benefits to this day and am battling to see a specialist and have to continually battle the system to get the drugs I need despite the fact I pay my taxes and for my prescriptions and there is no private sector alternative for people with chronic disorders.
Its a trap by healthcare and then a punishment by stigma by benefits to add to the humilation and no political party has even the remotest idea on how to deal with this situation (at least they consistent) and are unable to improve it or indeed do what is best for the real economy.
I always thought the social model was about disability being fostered by social and physical barriers, i.e. the wheelchair user cannot work because the building is accessible (which it should be), while the "medical model" is that they cannot work because they cannot walk. It's not meant to be about denying that there is any physical reality to disability or blaming them for not doing more than they reasonably can.
ReplyDeleteIf anything, it's more in others' heads than the person with the disability: the person who thinks they just can't do it, or that it's not worth letting them try, or who pleads "health and safety" when refusing a disabled person entry, or is unwilling to find ways of working round their disability because it's easier to leave them and work with someone who doesn't need any accommodating.
On the other hand I do agree that the social model has its limitations; I had it thrown at me by one activist in regard to Lynn Gilderdale, and there's not much you can do in the condition she was in (totally bedridden, unable to speak, intolerant of much activity or even prolonged company).
I also think some advocates are too idealistic about what they can expect society to accommodate. This is particularly true in the autism community, where you have two opposing groups of self-advocating, high-functioning autistic adults and parents of low-functioning autistics. The former group seem not to accept that there is any aspect of disability to autism. I find a lot of the talk of "neurodiversity" quite frustrating. (I wrote about it here last year.)
I also think some advocates are too idealistic about what they can expect society to accommodate. This is particularly true in the autism community, where you have two opposing groups of self-advocating, high-functioning autistic adults and parents of low-functioning autistics. The former group seem not to accept that there is any aspect of disability to autism. I find a lot of the talk of "neurodiversity" quite frustrating.
ReplyDelete*************
This this and a thousand times this. I get very frustrated about this as well - the autism-is-evolution/no-different-from-other-children tends to put all the blame on the heads of parents who are being assaulted and sometimes put into hospital by their autistic children who are much lower on the spectrum.
It does NOT help for the community to be so divided and even the disabled community can tell each other "It's all in your head - I've run a marathon/been cured/found a miracle drug, why not YOU?"
To be fair, as I understand it, the authentic social model is about separating the medical disorder from the effect it has on your life. I'm no expert, but this makes sense to me - I'm narcoleptic, but that's the disorder, not a disability. The disability (or part of it) is that I need help getting up in the morning, for example. The social model is also about criticising society more widely for being exclusive - it's society's place to reduce the disabling effect - let's take the stereotypical case of wheelchair users. It's society's place to make sure pavements, shops, and transport are accessible to those in wheelchairs. That bit falls down in two places - one is to assume that this leaves those in wheelchairs are then effectively not disabled, and the other is to assume that such straightforward things can be done for all disability issues.
ReplyDeleteThe social model does promote integration, of course, but not to the extent promoted by various groups, seemingly including the government, claimed to be part of the social model. AIUI, this is more properly part of the PSYCHO-social mode, strongly promoted by those with incentive to deny, deny, deny.
This is all as I understand it, may be wrong, etc etc. I also don't doubt your experience at all. A disturbing number of doctors seem to put *everything* down to somatisation, and then don't even understand what that is properly - you can somatise yourself into a stroke, and it's as dangerous as any other stroke. The symptoms are real, the risks are real, and there's no conscious process involved. Also, somatisation is a diagnosis of exclusion, largely, and needs therapy to treat, not scolding. Trying to think of other ways to say "many doctors jump to the assumption too quickly"...
The government are using the 'Social Model' of disability. The social (as opposed to the medical) model of disability, says that it is not physical differences or medical conditions (impairments) that disable individuals - it is the attitude and reactions of society to those peoples' needs that means that they are 'disabled'.
ReplyDeleteSpeaking as someone who has a long-term, debilitating and disabling illness, I really cannot agree with this. I am very worried that the 'Social Model' excludes those of us, who, through no fault of our own, are prevented from working or even being included in most normal activities of life, due to our illness. For us, it actually IS our medical conditions and impairments that disable us... as well as society's attitude.
The social model was never meant to be used in isolation. It is an academic tool to be used alongside other models as a framework for reference when discussing all aspects of disability. The use of the social model alone puts us in a very vulnerable position.
It must be remembered that many people with chronic illnesses and disabling condition have to stay at home, and often in bed when they are disabled by their illness. This makes their disability ‘invisible’. They do not conform to the widely perceived idea of disability - a person in a wheelchair who is able - if only society would facilitate them.
Equality, access and communication in society and in the workplace are things we must strive for, but even if they existed it would do very little for those who are simply too ill to participate, a point that gets ignored constantly.
The government are already using the Social Model as a way of justifying their cuts and their drive to get ill and disabled people off benefits and into work. (What work?!!)
Of course, I wholeheartedly agree that those who are really able to work must be given support to do that, but there are millions who are simply not able to work and they must not be forgotten or pushed into work related activity simply as a means of getting them off disability benefits.
The government also seems to be promoting the idea, aided by the media, that people are only worthy if they fit a certain ideal in the way that they contribute to society. Those who are sick and/or disabled do of course contribute in numerous ways, but not necessarily through paid employment. To the government, we are not 'productive' and therefore not deserving.
Right now our society is riding a very fine balance, which is about to tip, between treating people as human beings each with their own unique worth and simply writing off those that are 'of no use' to the rich and powerful.
http://en.wikipedia.org/wiki/Biopsychosocial_model the 'medicinal' models tend to use the psycho/social model which is the one that says its all in your head and also the biopsychococial model which from my experience of a pain management programme for musculoskeletal conditions - says its all in your head - we believe that you feel the pain but it is the same as the pain some people get from an amputated limb. thats what I was told pre my diagnosis of hypermobility syndrome which took 8 years. It is a way of denying benefits and conditions as the conclusion drawn is that even if activities cause you excrutiating pain - they are not harming you! treatment involves seeing a physiotherapist who gives the same exercises to all participants no matter what theyre condition - I have met people on line who have been damaged permanently from these programmes - you also see a psychologist who informs you you will be able to do anything you like once you have finished the programme and then theres the pain medication - which in my experience was amitryptelene - a drug which is totally inappropriate for anyone with POTS (a condition associated with HMS) as it lowers your blood pressure further and will result in your passing out. There is no medical investigations involved and the person who runs the clinic is a GP who has trained in pain management (not sure of length of course) - this GP over ruled 2 consultants who had recommended nerve block injections and steriod injections. This programme is used for many conditions - including fybromyalgia, ME, CFS - oddly enough when the guy who came with me to the appointment who worked for the DWP - says it sounds like DWP type stuff - its rubbish - you need proper treatment.
ReplyDeleteAs others have said, the Social Model of Disability has nothing to do with what causes your impairment - in fact, it is particularly useful for those of us with chronic illness. It merely differentiates between those things which are about our health, and those things which are done to us.
ReplyDeleteFor example, the Medical Model of Disability compels us to accept poverty, dependence on our families and negative treatment because we are broken. Our health is crap so what we do expect? If we want our life to get better, we have to rely on medicine - which means waiting, but it's nobody else's problem but our own.
The Social Model says, we're sick, we have genuine limitations but there are some aspects of our lives - like poverty, like the way we are spoken about in the press, like the loops we have to jump through, like physical access as well but also the attitudes of people towards all kinds of disabled people - which belong in society and *can* be changed even if our illnesses cannot be cured any time soon.
The Social Model was developed by disabled people to challenge pre-existing dominant models (the people who coined "The Medical Model" didn't support it, it's what patriarchy is to feminists). Please read all the great writing by others in your position rather than buy into the government's twisted caricature of the concept.
Meanwhile, some people's problems are in their heads and that shouldn't matter a fig either. The Social Model is concerned with the only things all disabled people have in common - and that's how we are treated.
Basically, what it comes down to is - the problem you describe is very real, but it isn't the Social Model. The Government has been misrepresenting the Social Model (as did the last one, though slightly less badly) - possibly with the goal of removing it as a tool to press for better social adaptation, who know?
ReplyDeleteWonderful post from Sue and every subsequent comment has identified the problem suffered by the chronically ill and sick perfectly but only those who have directly experienced it can ever truly understand it. No normal person even those in the medical profession can fully understand what hell we go through and how it totally destroys our lives in every way. There is no escape from the sickness demon it follows you everywhere even to bed, it’s with you on your Birthday, it follows you out to the garden on a summers day always thinking of new ways to torture you I can assure you it’s not in the head.
ReplyDeletewe all wanted to be included, but now this has happened we are all scared of it
ReplyDeleteGoldfish - (and others) OK, perhaps I should have written the "Bio-psycho-social" model, but it wouldn't have made for a very snappy title ;)
ReplyDeleteAlso, I happen to disagree about the social model and I assure you I have read a lottalottalot about it. (Just a gentle defence :)
I agree there are problems with the authentic social model, but it's a terrible shame to lose the positive bits of it because of misunderstandings of it. Basically, it's not social issues that lead to all disability - but a lot of it (in the terms of the social model) can be best addressed by social means. Denial of disability is out of order in every case, though, and denial of illness equally problematic. I have a neurologist who will put everything down to depression if you have a history of it, and is reluctant to even test for anything else. I had to push to get tested for narcolepsy, and then the test was positive...
ReplyDeleteOh God yes. The "you could try..." Uh, I *have*. Why do these people always think they're the first to think of the thing that will magically make you better? My mother's was always "you're just not getting enough exercise", because she couldn't be bothered to admit, even to herself, that I'd been raped and needed time and kindness to recover. People acting like that always have their own reasons, emotional or financial, for not wanting to admit that you're genuinely sick, and they could talk about them, rather than trying to make their beliefs real, but they don't. Frankly I despise their lack of honesty.
ReplyDeleteYou're right Sam. I suppose for me, it's a bit like feminism. Absolutely crucial, no problem with it at all.
ReplyDeleteUntil, until..... until vested interests and fringe groups and radicals and the elite shape it into something it was never meant to be.
I have concerns with the social model in many areas of healthcare as well as welfare. In mental health nursing, I've seen it as positive and empowering but at other times as patronising and an easy excuse for bullying.
So it is in welfare.
I suppose coming from a position of being almost exclusively dealt with under the social model, the medical side has often been so hard fought it's nearly killed me! My opinion is probably not rational and too based on personal experience, but for me, the social model can clomp right off!
The merits and problems of the social model used to be a big debating point on an old BBC messaging board.
ReplyDeleteI remember being less than convinced of its value for people with chronic illnesses and warning that although it would be thoroughly enabling for people who were healthy, it could possibly cause real hardship for people who were sick.
I am sorry to see that my warning appears to be coming true with the government adopting an approach saying that with the right help anyone can work. I think that was always the biggest danger. Shouting that you're not disabled is simply not helpful when you have other people desperately trying to say that they ARE sick.
The point in a post above about changing from a "waiting" position is actually what puts me off. I can no longer work. It took a while for my illness to reach that point and even longer for me to accept it and to actually stop! What would it take for me to start working again? Very simply an improvement in my treatment. (A cure would be nice but I'm not going to ask for a miracle ;) ). Nothing else will help. No amount of adjustments, help, carrots or stick will get me back to work. I HAVE to wait for a medical improvement. I don't particularly like that but it is the way it is.
Now this isn't to say that I spend my days lying around scouring the internet reading medical journals to see how research is going. I've accepted this is the way things are. I can't work. There is simply a small possibility that one day a better treatment *might* be found, that would work for me and would enable me to go back to work.
Instead I try to live as good and happy a life as possible as someone who cannot work and within the restrictions imposed by my illness. I think I do pretty well. I am certainly never bored. I have some hobbies. I help out on a support message board. And I am doing as much campaigning as I can for disability rights. So I don't feel that my life is "on hold" as it were. However going back to work must wait. The social model doesn't seem to allow for this and thus neither will the government.
Right now the attitude is that other disabled people work if adjustments are made and therefore so should I. I should learn to "cope" with my illness (within a year if I was in the WRAG).
Well, no. Some illnesses cause too many and too bad symptoms to be able to work with. And actually if we are going to talk of blame, if it is anyone's fault I am not currently working it is medical science for now being advanced enough to keep me alive but not being advanced enough to treat me!
Yes. Exactly right. Social model has its uses when ppl who could do things prevented by their or others attitudes or by badly designed environments. Ppl with problems can be enabled to certain extent by other ppl having the right attitude themselves or by alterations or adaptations. HOWEVER there illnesses and disabilities that no amount of positive thinking, determination, or aids and adaptations can remove the incapacity from. I battled with my illness most of my life was determined to be very active and involved and fought to hold down a demanding full time job. For as long as I could. But the point came when all that battling almost killed me. I still live as full a life as poss but it very limited and nothing would allow me to work. I don't need incentives I need a cure. Or at very least something which reduces the effects of my illness.
DeleteYes, it's not really about the social model, used by disability activists, so much as the psychosocial or biopsychosocial model, used by a clique of psychiatrists and insurance companies. The government certainly has done a very good job mixing them up to its benefit though, putting all the blame and responsibility on individuals while also claiming this is what disability campaigners wanted all along and we're all officially equal now, so yay!
ReplyDeleteIt's important to note that those of us who constantly have to fight against the "all in your head" to get appropriate treatment or even just recognition of the realities of our disease are not automatically dismissing or stigmatising actual mental illness, as is often claimed. Rather, the doctors who tell us this are. Because they are the ones who think we're hysterical, attention-seeking, lazy, scroungers, who tell us to go away and stop wasting their time and pull ourselves together. If they were right that something in your mind, in your life, was driving you to this, isn't it still a very serious problem that needs proper investigation and treatment? The way we are treated (or rather not treated, if you want to pun) further stigmatises people with mental health problems because it implies that they should just get over themselves and get on with life like everyone else has to. Unfortunately but unsurprisingly this does spill over into the attitudes of some people fighting for recognition of their illness, which isn't helpful for anyone. I think it's much more common, though, for those of us who've been subjected to this particular pejorative variety of "all in your head", which is not so much a diagnosis as a judgement on your personal failings, to be mistaken, when we complain about it, as wanting to distinguish ourselves as having "real" diseases from those people who have anything that might be described as "all in the head". I think it's really important to get clarity on this. Though probably difficult, as I've really struggled with writing this and I'm still not sure how much sense it makes!
And now Loopy's post has made me think again - yes, it's true, the social model is also being misused. It's often occurred to me that one problem is that someone can have very severe physical impairment while still not really having any more understanding of what it's like being chronically ill than a non-disabled person does, if they're both healthy. There are people whose problems could largely be solved through the social model, whose biggest problems are the barriers and prejudices of others. I believe they still won't be because the government is paying lip service for its own ends rather than really wanting to change things for people whose lives could be transformed, but that's another matter. Thing is, we have a spectrum where at one end we have people who are fighting not to be underestimated, people with obvious visible impairments, to not have people make poisonous assumptions about them being useless, to be able to get on with all that they *can* do without society throwing up barriers. And at the other, we have people with less obvious or entirely invisible impairments, who are fighting to be believed that they really are ill, to not have people make poisonous assumptions about them being lazy and not really trying, to be given the space to deal with the problems of illness itself. In many ways they are two different fights, but we've all ended up having to fight together when it comes to sickness and disability benefits, and difficulties result. Arguments about the extent to which the social model is useful being one.
ReplyDeleteHi Jodi.. I've been trying too say this for 18 months.. You have put it so well...
DeleteThis is an excellent discussion all round..
Best wishes to all.. 'Nita
You're probably long gone Jodi, but that is a kick ass comment!
Delete(And yes, I know there is much overlap, too. That's why I said a spectrum. I'll stop posting now but I get nervous about being misinterpreted so couldn't just leave well alone ;))
ReplyDeleteI think you are using the good old biopychosocial model used by medicos cause they dont want to acknowledge that they are creating barriers under the social model of disability.
ReplyDeleteFor a refresher I suggest Oliver and Sapey, 2006. Can not remember the title but blame the latest drugs for the aphasia. It is getting really bad at the moment with everyone having to play guess the word I am looking for to express ideas.
@Jodi
ReplyDeleteYes, that's a very good point. It is a deliberate conflation on the part of the Government. I get what you mean, and I don't think people with physical conditions alone are stigmatising people with mental health problems at all. There is no such thing as "all in your head"/"just pull yourself together" with either physical or mental problems (to the extent that they can even be separated). It's outdated, puritanical, stiff-upper-lip superstition, nothing more.
Obviously there are conditions such as Munchausen's Syndrome that to the lay person could appear to blur the line, but they are problems in themselves too.
Jodi - I get what you mean completely. I hate that pathetic "It's all in your head" as you say, even if it were, wouldn't that make it a serious illness in itself that needed treatment.
ReplyDeleteYou're right, I'd never want to imply that mental illness was somehow inferior, I think that's just what many doctors and health professionals do when they try to fob off someone with an illness.
Thanks for clarifying it for me.
Bravo for writing this :)!
ReplyDeleteI've been fortunate in that I found an amazing gastro doc in Falkirk Royal by the name of Dr Law. He examined me, spoke to me, REALLY listened. He made a difference to my life - in fact he SAVED my life.
He didn't doubt I had a case of Crohns. When I explained what had happened in my process with other doctors - much like yourself, Sue, spanning back to my childhood - he was angry. He told me he was angry and said NO ONE should have spoke to me like that, that the first doctor to have picked up on all my gastro problems should have ordered a scope (colon-scope) straight off the bat.
The same charming doctor (from my old practice) who repeatedly fobbed me off was the same doctor who drilled into my head how "awful" a colon scope procedure was - he went into great detail about the drugs I'd have to take and how painful it all was. I was a terrified mess at my appointment when I finally went for it. I was shaking, crying and on the verge of having a massive anxiety attack. I honestly wasn't sure I could go through with it.
The nurse sat with me and explained everything and although my husband couldn't be with me through the procedure I felt reassured. These hospital nurses and doctors are sympathetic in the main whereas a lot of GPs seem bored with their patients. Sick of their complaining, I suspect, but tough. They should just suck it the hell up!
For years everyone thought I was making up my symptoms for attention - the only 'attention' it got me was negative attention and made me feel ashamed for being so weak. Even now I still believe things are in my head, even though I know its real.
Through my colonscope they removed three growths from my bowel...and guess what? I didn't have Crohns. We were all baffled, although over joyed. For years, though, the doctors initially told me I was eating all the wrong things (before even asking me about my diet) then it was 'oh you have IBS.' I read up on IBS and the symptoms didn't seem to fit in aspects, so I kept pushing for answers.
If those growths hadn't been removed they could have developed into bowel cancer. That is an overwhelmingly scary thought - and I'm so glad I didn't let things slide, that *I* was an advocate for myself, that I believed in myself enough to keep pushing for answers. That I knew this problem was inside my guts and not in my head.
In your face medical profession.
Sounds like my life Cara, thanks for the comment. Perhaps it's a bowel thing!!
ReplyDeleteIn this moment all the "social models" must be abandoned because can be instruments for dangerous cut for sick and disabled.
ReplyDeleteWe must not forget that many disabled persons are also sick. In some countries of Europe, like for example Italy, the distinction between sick and disabled does not exist:
the sick and disabled are considered all disabled.Sick and disabled MUST REMAIN UNITED IN THE FIGHT.
These "social models" are also supported by insane sociologists.
For example the italian "famous writer" Luca Ricolfi , "professor" at the University of Turin and member of the EAS (European Academy of Sociology), stated the necessity to cut 8 billions euro to the sums paid by the State for sick and disabled because sick and disabled are fraudsters and parasites. http://it.wikipedia.org/wiki/Luca_Ricolfi
http://www.impegnati.it/articoli/fatti-e-commenti/29-annotazioni-a-brainstorming-sul-problema-nord-sud
It is necessary to be a "professor" in order to write these stupidities ? This Ricolfi is a prophet considering that the government of Berlusconi wants now to do such kind of cuts ? Seems that with these "professors" Italy has become the homeland of the donkeys.
In the same order of ideas the barbaric minister Roberto Calderoli, a man with non-transparent past, consider the sick and the disabled like shirkers.
http://blog.vita.it/francamente/2011/08/25/una-vergogna-di-nome-calderoli/ http://temi.repubblica.it/micromega-online/calderoli-roberto-lega-nord-ministro-per-la-semplificazione/ http://en.wikipedia.org/wiki/Roberto_Calderoli
I think that some very rich persons are financing in bad faith also sick sociologists in order to implement this "social model".
You are probably long gone to sir, but I speak Italian and just read the first link. Ricolfi is just like our James Purnell!!
DeleteI've studied the North South thing in Italy a little and know of Politicians like him arguing that the affluent "taxpaying" North are "carrying" the "lazy", South.
I've faced similar denial from doctors, even when presented with evidence from specialists in pain management that chronic pain impairs cognitive function, an occupational health physician I had the misfortune to have to deal with tried to claim that being in so much pain I couldn't string two coherent thoughts together shouldn't affect my work (it wasn't as if I was doing anything overly complex or critical, just trying to make sure aircraft didn't fall out of the sky at inopportune moments). That kind of attack through denial is perhaps the most pernicious and insidiously demeaning kind of disability discrimination, because it leads other people to conclude that you are lying about the effects of your disability. And that attack is one of the forms of discrimination we mean when we talk about the Social Model and disability as discrimination experienced as a result of external factors; and this does very much include people as well as the built environment - if people's minds aren't accessible then that's just as much a barrier to us as a set of stairs or whatever.
ReplyDeleteWhen Loopy S (hi Loopy!) mentions the debates on Ouch I'm one of the guilty parties, and I fully agree that the Social Model does not cover the clearly disabling effects that arise directly from impairment -- I'd have to be stupid to ignore all the stuff I can't do simply because of the pain I'm. But I was also persuaded by one of the other participants that the Social Model, as properly defined, isn't trying to cover this area, and that the disability arising directly from impairment is separate to, but perfectly compatible with the Social Model's concept of disability as discrimination resulting from external factors.
The problem is that the number of people who understand that distinction seems to be tiny. The Social Model shouldn't be used to say all disability results from social effects, not the impairment, but many disability activists do use it in that way and that means Loopy's concerns are fully justified. (My personal feeling is that the attempt to redefine disability as discrimination is the model's biggest mistake, it should just have stuck with disability and disability discrimination as linked but separate effects)
Meanwhile the insurer-medico-political-complex has set out to deliberately hijack the Social Model, arguing that if disability/discrimination is a function of society and society has legislated against it, then clearly disability is no longer an issue -- the psychiatrists call this 'magical thinking' when it's inadvertent and the result of illness, when it's deliberate and calculated then we have to start with malicious and discriminatory and work our way up from there.
The Social Model is a valid tool for identifying discrimination, when applied properly, but with the way the politicos have set out to deliberately distort its meaning for their own ends there is a clear case that we need to reclaim its proper usage, if necessary by redefining it, and expose the insurer-medico-political-complex's Biopsychosocial Model as the calculated excuse for discrimination it really is.
@Matt " I find a lot of the talk of "neurodiversity" quite frustrating."
ReplyDelete@Oyas_Daughter "I get very frustrated about this as well - the autism-is-evolution/no-different-from-other-children tends to put all the blame on the heads of parents who are being assaulted and sometimes put into hospital by their autistic children who are much lower on the spectrum.
It does NOT help for the community to be so divided"
It doesn't help the community to ignore the legitimate views of some disabled people and insist that they conform to the views of others. There are very good reasons why some groups of disabled people have views that are completely at odds with the equally justified views of other disabled people and we damage ourselves if we refuse to acknowledge that diversity, because accepting diversity lies at the root of the change we are attempting to make to society as a whole.
We have a well-established, if still controversial to some, precedent for accepting some forms of disability as a 'normal' but socially distinct cultural group in the Deaf community. The neurodiversity movement (and I identify as mildly neurodiverse via dyspraxia) leverages on that to say that thinking in a different way to other people isn't something that needs fixing, but simply part of the normal range of human development. That isn't a problem and we should all accept the rights of those who subscribe to that view to call themselves neurodiverse, even to object to being called disabled (personally I don't have an issue with being both). None of which is to deny that the spectrum of neurodiversity includes some conditions that are very profoundly disabling.
DavidG - brilliant comment tonight, thanks so much for leaving them :)
ReplyDeleteOh, i think if your saying you got a problem and you are slightly sane! Yes there is a problem.....whatever it may be and in general people try to do their best, what ever.
ReplyDeleteHow ever some people go out to tell lies to cover the truth.
Perhaps if people were honest and others accepting to offer help if needed the world and our society would be a better place.
Excuse me for being divisive Sue but I am disabled. I am not disabled because of society's attitude towards me, or whatever obstacles it puts in my way, but because I have rheumatoid arthritis (among other things). For example, I used to walk miles to school and back every day, and the same distance to youth club and back 3x a week. Now I have trouble getting from my chair to the front door, less than 20 steps. Where is society in my hallway? What obstacles has society put in my way in my hallway? None.
ReplyDeleteIn my experience, many of the disabled activists who subscribe to the social model were born disabled. They don't have any idea how it is to become disabled, to have to wave goodbye to a life of fitness and wellness because of something in your genes, or because of an accident or illness. I'll give you an example. A friend of mine who was born with spina bifida became a local councillor. She was adamantly opposed to free disabled parking in that borough because she said "disabled people don't want charity, they want to be treated the same as everyone else". That's great, but if you spend all your ESA on prescriptions every month you're very grateful for a little help from the local council you pay rates to. Nope, she couldn't see that one.
Chris:
ReplyDeleteIt's a little complex, but the social model doesn't say disability is all social, it defines disability as social, using "impairment" (IIRC) to refer to the physical issues. That is harder to figure out with chronic illness than clearly defined "healthy disabled" stuff, and it isn't often explained well so people get the wrong end of the stick. It's easy to get the wrong end of the stick when people hold it out to you wrong-end towards you ;)
it's the biopsychosocial model that is now being used by UNUM etc that says it's all in your head and Not and never has been the social model that says this.
ReplyDeleteI have very few traditional barriers to work. The problem is, I tend to vomit on my boss. Or have to take opiates. Or pass out. Or pooh my pants.
ReplyDeleteThere isn't a damned thing society can do about that.
Society doesn't disabled me. Not in any way except perhaps I'd like public toilets not to give me PTSD.
My illness disables me, which is why we need both the social AND the medical model to be used where appropriate.
Conditions like mine have simply been airbrushed out of disability provision, public compassion, and understanding. Lower rate this, moderate that, it's was paltry to begin with, now all of that has gone.
Thanks to Ununm and Freud and their "Biopsychosocial" bastardisation of the social model, me and millions like me are screwed. Utterly screwed.
We NEVER get higher rate care or mobility because we never get quite "disabled" enough by our illnesses to meet many of the descriptors. But we often can't care for ourselves or get about.
It's a mess and I think I have to argue a little for the medical model to be embraced by those who reject it as something fellow disabled people desperately need too.
I think we can do that. Accept that either model might be right for a particular disability. Personalisation right?
I think you might have misunderstood the medical model. It's a very common mistake to make due to the slight misnomer. It's also sometimes called the "individual model" and that's perhaps a better, clearer name.
DeleteI should stress at this point that I'm not saying "you must obey the social model, the medical model is evil." If you choose to embrace the medical model with full understanding then that's your call. But your comment indicates that you, like many others, have misunderstood it based on the "medical" name.
The medical (aka individual) model is the idea that your disability is your own tough shit. It's quite a right-wing philosophy. I'm much too tired to give a decent explanation so instead I direct you to this excellent post by Lady Bracknell.
It's a mess and I think I have to argue a little for the medical model to be embraced by those who reject it as something fellow disabled people desperately need too.
I really don't see how anybody benefits from a society that says "haha, screw you for being disabled. If you're an incurable you can just suffer alone. Bwahaha." Which is the medical/individual model perspective.
What I think you're trying to say is that we need to take medical conditions into consideration when granting adjustments. The social model never says that that shouldn't be the case. And granting adjustments (like DLA, etc) at all is not high on a medical-modellists agenda.
I'm also fairly certain that the biopsychosocial model is not a bastardisation of the social model because despite the slightly similar names they have completely different origins. The biopsychosocial model originated as a medical idea to explain why 2 people with identical conditions would recover (or not) at different rates. It was then (mis)appropriated by the likes of Unum to use as a victim-blaming tool to deny insurance payouts.
The social model was developed by sociologists to understand/explain/study discrimination.
Hmm. I've certainly read expressions of the Medical Model that aren't that callous. Still based on individuality to a certain extent, but more agnostic on whose responsibility it is.
DeleteThe Social Model, by its nature, says that disability can only be alleviated in a social sense, and that society as a whole is responsible for it. The Medical Model, as I understand it so far, says that disability, by which they mostly mean what the Social Model calls "impairment", should be removed, treated, or whatever internally to the disabled person. Fix the eyesight, treat the pain, have a prosthetic limb; where it collides with the Social Model there is what to do when this can't be done - MM says to help the person adapt to "able" society, SM says society should adapt to the disabled person. If you look at both models slightly askance, and blur some edges (and fudge some fine detail), they can actually dovetail a fair amount, I think.
That said, the idea of DLA or PIP is much more appropriate to the MM than the SM, that disabled people need these extra resources to enable them to adapt to able society. If the SM were truly implemented, society-wide, DLA or PIP might form an element of that implementation, but it could just as easily not, and even if it did it wouldn't need to be applied as broadly.
I don't have time to write a full reply, but just wanted to make one point - the stigma associated with not working (or the idea that we must all be economically useful) is a societal issue. If we were valued for being human beings rather than for what we can do, would there be less issues?
DeleteYes, personalisation is RIGHT.
ReplyDeleteI'm going a little beyond my own knowledge here, but I believe that the Social Model incorporates the Medical Model in those cases, in a sense - it just says that disability is only the social cases, not the inherent ones. It's a question of definition more than anything else.
ReplyDeleteI *think* SM advocates treating impairment medically where possible/appropriate.
However, to Sue I would say that the social element of your disability in terms of work is there - it's that people are generally required to work at their employer's premises. There are probably other aspects as well.
Personalisation is the key! I used to pass out at work but it didn!t stop me working. Now I think it would as would my fatigue and breathlessness which the Govermenrt consider no barrier. And I take controlled drugs which actually make me feel better. When I was young I suffered from psychotic depression and the thing that helped me recover was a job. But try getting one when you've been in hospital with mental illness. We need the sort of help that only a good deal of money can buy, not a cheap computer program.
ReplyDeleteA good website is useful.
ReplyDeletehrmgroup.org
v-2-1.net