You know what the weirdest thing about the whole mess of being sick or disabled is? You suddenly spend the rest of your life having conversations that make no sense at all. Maybe you were a lawyer or a teacher, a graduate or a gardener and you lived a totally "normal" life of uni or clubs or cutting edge ambition - then suddenly you're nothing. Just nothing.
.
You find yourself sitting in front of a doctor or DWP "assessor" or MP speaking the same words you used to use in your old life, but suddenly no-one understands them any more. You say, for instance you are in pain and doctor might tell you you're not!! What to answer? "But I am!" You suddenly find that these circular conversations can go on for months or even years with no resolution. You wonder what words it is you need to find in this new life.
Next, you are dragged in front of an "assessor" who asks you to touch your toes and walk up and down to somehow judge whether you have bowel disease or schizophrenia (!?!) You try to explain how your condition affects you and what the symptoms are, but they ask if you have any hobbies (?!?) You are expected to go through this odd experience to claim a few hundred quid a month that doesn't even pay for food and heating.
In hospital you often find yourself assuring a doctor that the drug you're allergic to really will have a lethal reaction, or that whether s/he says it can be one of your symptoms or not, you are indeed vomiting every ten minutes. Bizarre, bizarre conversations that ultimately conspire to make you lose yourself.
You can't understand where the person went who everyone used to understand quite clearly. Who wore a suit to work or sacked people or discovered new species. You used to speak the same language, but now you find yourself pleading for rent or food or care or medications or even basic human needs such as dignity or cleanliness.
MPs release statements and you read them and think "Huh? He said what?" Daily you sit open mouthed as policy after policy totally ignores anything that might work and instead, goes straight for the path of most destruction. Now they're all speaking a different language too!!
The media are calling you a scrounger, doctors are calling you a hypochondriac, friends might be calling you a lightweight assessors are calling you a cheat, and MPs are calling you a burden!!! How's that for an attack! You live in another world now, but you used to live with all those other people....
The strangest thing of all is that the world doesn't seem to care much either.You explain what you thought was totally obvious, but no-one seems to get it. You must be speaking a different language, because surely it was only a few months ago that everyone was talking about "protecting the vulnerable" and "fairness." If you had asked anyone what percentage of the sick and disabled they thought were cheats, surely no-one would have put the figure at 93% - that's ridiculous. Yet suddenly, when the DWP miraculously claim only 7% of previous claimants were "unfit for work" everyone believes them!!
So, if anyone out there speaks "able-bodied" do you think you could give me a crash course? Only I've got some really important things to tell them but I obviously can't find the right words.
Excellent piece Sue.
ReplyDeleteregards
Sue, once again you have brilliantly summarised the way in which we are disempowered by the powerful. This abuse of power is hateful.
ReplyDeleteIf I were still a Registered Nurse and was carrying out ESA assessments, I would be deeply concerned that I was not acting in accordance with the Code of Conduct, namely "Make the care of people your first concern, treating them as individuals and respecting their dignity" and "Be open and honest, act with integrity and uphold the reputation of your profession".
this should be essential reading for all GPs, MPs and DWP staff - indeed for everyone. Thanks for a brilliant blog!
ReplyDeleteCan definitely relate!
ReplyDeleteYes, the people making the decisions often have no real experience or interest in those that they have a profound effect on.
ReplyDeleteGreat piece!
Excellant summary, this happens all time not just in the medical or gov departments,Just reinforces all the time that noone listens to you. This happened to be while back but it very typical of daily slog we face. (Im a wheelchair user)
ReplyDeleteMe: Enters cake shop, buys cake, pays.
Cakeman1: Do you need a bag?
Me- shakes head-no
Cakeman1: Are you sure????
Me- Shakes head no- (its hardly a difficult
question)
Cakeman1- cakeman 2- Do you think she needs a bag?
Cakeman2- Oh well best give her a bag
Cakeman1- hands you cake in bag
Me:!!!!!!
Oh this is so helpful, and so sad, and so true, Jen
ReplyDeleteBloody hell! You just described what my life used to be like when I had a long term illness. I was accused of faking all the time, never mind that I was constantly bent double and shaking with nausea and pain. I thought the real me had died and been replaced with a zombie I hated. Suddenly nobody trusted me. The doctor sent me to a cognitive behavioural therapist who was convinced that not only was my illness all in my head, but so was the workplace bullying that had led up to it. It ruined university and the next few years for me.
ReplyDeleteBecause I simply had digestive problems, that never counted as the kind of sickness or disability that would get you any concessions. So basically I just had to find full time work and if I couldn't cope that was my fault. It did help when a friend was sympathetic - there weren't many but there were a few.
I'm still working out what the bloody hell to do about it. It's a time I want to forget, but I can't forget, because this is happening to other people - and other people are suffering a million times worse than I did, for at least I was able go back to my family like a weeping child.
I read a great book called "See You Thursday" about a girl who befriends a blind chap, and is infuriated that people speak to her rather than him in shops (for example). He shrugs and says "Oh, you get used to it". Grrrrrrrr.
I think one problem is our invisibility, and I'm hoping that with the Internet, this will change. Incidentally, I'm soon - hopefully - going to be setting up a discussion forum for disabled people; it'll be for local folks but maybe we could get a lot more Internet discussions and campaigns going? If it goes well, may I link to it here?
I think the only thing that really helped was finding things that I was still good at and could take pride in. When most of your energy goes into dragging yourself to and from work without collapsing in the street or puking in public, this is difficult. But with time it is possible. If you do work which other people admire, and then they realise this is someone who is very poorly, maybe that can to some extent stop the dehumanisation. But put it this way - I am still very much at the "don't know" stage. :-(
As usual, a fantastic observation on our lives. However, perhaps you can help me find a phrase that is the opposite of disabled that isn't able bodied? I have bipolar as well as a number of chronic physical health conditions but am still relatively able bodied (although it's always hard to get out of bed). Not a criticism at all; just trying to find some unified language where possible, particularly for those with hidden disabilities.
ReplyDeleteDeborah - That's a really interesting point - I've been thinking about it all night.
ReplyDeleteIt's actually the same with "Disabled" I ALWAYS write "Sick and Disabled" because often it's those who are sick who slip through the net.
Have you come up with anything better than able bodied? I couldn't think of anything. Everything seems to have negative connotations - strong/weak able/disabled healthy/sick.
Something else that REALLY annoys me is some kind of implication that mentally ill = not very clever. Same with disabled. Do you find that?
Just "healthy" I guess but it doesn't really have the same descriptor as able-bodied.
Anyone else? Got any suggestions? (Nothing that sounds too PC though, or people just tut and switch off I reckon)
Coming from a nursing background (though its been a while), the core to identifying disability to me is the dependence-independence spectrum with respect to meeting ones basic needs... the health model doesn't work because health is poorly defined while ill-health is readily identifiable as a deviance from the norm. We need a functional description. One that says what is in the tin.
ReplyDeleteSome disorders result in temporary periods and varying degrees of compromised independence (say bipolar... at least when looking at the impact of the disorder itself and not looking at the incapacitating effect of social labelling, which is another kettle of soapy frogs entirely), while others result in permanent and varying degrees of compromised independence. Still others result in progressive compromise...
So disability/able-bodied strikes me as a profoundly un-useful distinction (and a false one at that)... a continuum of uncompromised-to-compromised independence at least directs our attention to look for the specific areas of compromise without reference to the physicality of otherwise.
As an aside, Sue I recognise your Kafka-esque scenario... my "compromised independence" is comparatively mild (Idiopathic Intracranial Hypertension) at present... but getting a diagnosis was bonkers!! I have the single diagnostic criteria (high cerebrospinal fluid pressure)... but the doctor was insistent that literature meant that I should suffer worst with headaches etc in the morning, not in the evening as I reported... so repeatedly doubted the findings of his own investigations and my reporting of my symptoms... I'm not quite sure why it was down to me to explain why I didn't do what his book said I should... maybe he needed to think in terms of writing a new bleeding chapter to the book :-)
Meant to add, without writing an essay, that we can by compromised in our independence by the behaviours of others rather than by our own disorders etc... attitudes and prejudice serve to compromise independence as well as deficits and abnormality of function
ReplyDeleteIt must be possible to demand a judicial review against the activities of Atos Healthcare; if they dont know what they are doing, then surely they are not a suitable contractor for this government? Just a thought.
ReplyDeleteRegards,
You should read Private Eye's article on how this process came about. The healthcare insurance company Unum, that ran it in the States, and which now owns ATOS, has multiple criminal convictions and is now banned from operating in most states. So they came over here and wrote the legislation for the political parties, via seminars at party conferences...now is their harvest time. The faulty tests are not an error, but an aim.
DeleteI'm able-bodied, and I don't speak the language either. As a psychotherapist, I've tried to support people through earlier re-assessments that seemed to directly contradict everything I knew about the individual concerned.
ReplyDelete'Something else that REALLY annoys me is some kind of implication that mentally ill = not very clever' - Indeed or disabled in general (excpetion for stephen hawking cos he's been on telly....) "
ReplyDeleteSO true!
All the support for helping disabled people with education/work in my area I've found is geared towards gaining basic skills education and menial jobs like shelf stacking or more vocational routes. Whilst I am sure it is helpful and valuable for many people I personally feel at a dead end as I've just graduated from uni and am looking to do a postgrad. Disabled people and people with chronic health issues need extra support at every level really and it's quite, ok really, insulting that disabled/mentally ill people are often seen as 'thick' and it's insulting that the majority of support for diasbled people into work/education seems to assume we're all in need of basic level help (which should obviously exist for those that do need it, but to assume that's all disabled/ill people need is crazy). I've pretty much been told since I have a degree and want to do post grad there's sod all extra funding or help for me as a disabled person at that level. So I am now at mercy of the uni funding gods and if I don't get funding I have no idea what I will do as I am not well enough to work full time (and I live in a region badly hit by unemployment to boot) for a year or two to save up enough money and I won't be able to work part time in addition to my studies as it's just phsycially and mentally beyond my limits, Oh dear this has come across a bit woe is me, the frustration just gets to me sometimes!
On finding this blog I became quite teary eyed. Suddenly I don't feel so alone In the struggle that Is being disabled in Britain.
ReplyDeleteI'm really glad and welcome. Together we've already achieved great things and can achieve much more.
ReplyDelete
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