Monday, January 07, 2008

Seven Myths about Incapacity Benefit

I used to feel quite defensive when people moaned about Incapacity Benefit but these days I just get very very angry. Every media story and every political statement made on this issue presumes that there is widespread fraud and "malingering", where there is absolutely no evidence that this is the case. Of course fraud exists, as it undoubtedly does throughout the tax and benefit systems, but there is no evidence that it is widespread with IB. In fact, I struggled to find any up to date statistics about fraud at all.

But see, thing is, people on Incapacity Benefits include some of the most vulnerable people in society. We're all made vulnerable by our dependence on the state and our relative poverty, but we're also a crowd of duffers; people who don't always have the intellectual, cognitive, physical or emotional capacity to fight their own corner.

Thus we make an excellent scapegoat. Of course, most of us are white British, so we're not perfect, but if people are fed up with the amount of tax they pay (and people always are), it is a sure winner to point to us sponging cripples and declare that we're not quite as crippled as we look (best of all, some of us don't even look crippled, which is surely proof we're on the make).

This week it was the Tories, with David Cameron stating,
"I don't believe that there are nearly half a million young people in Britain with a disability which prevents them from doing any work at all."
In other words, the figures don't sound right so there must be something amiss. What about 250,000? 100,000? 4537? What precise figure would satisfy the man's intuition?

Incidentally, when I was looking for the unfindable figures, I found that the excellent RADAR had had exactly the same idea, but they came up with slightly different myths to me. Also they weren't so angry so if anyone found this via Google and was looking for a serious reason, RADAR is a much better bet. Anyway...

1. People on incapacity benefit are not assessed by a doctor.

People can be so naive; frequently I hear or read people talking as if you just fill in a form, tick the right boxes and receive the cash. The Conservative Party has suggested we should be assessed "regularly" as if that doesn't happen already.

Narcissus quit work and sat around looking at his own refectionIn fact, people on Incapacity Benefit and Severe Disablement Allowance all have to see an independent doctor for an examination at least every three years. They also have to fill in the IB50 and their own GP will be asked for information about their condition. One cannot receive IB at all without a doctor confirming that, to the best of their knowledge, one is incapacitated for work. And I'm not sure anyone gets signed off as permanently incapacitated, even if they are medically retired in any other context.

2. People on Incapacity Benefit have never worked and never have any intention of working.

Nonsense. The majority of people on Incapacity Benefit become incapacitated in middle age. The older you get, the more likely you are to experience significant impairment. So most people on IB have probably worked for thirty or so years before becoming unable to work.

There is the very obvious point that if you do become incapacitated from work in your fifties for a period of a year or so and then get better, you may have significant difficulty getting a new job. This is especially the case if you are now able to work but you are no longer able to do the sort of work you'd done previously.

However, if we want people to return to work when they are able to do so, we need to create a society which doesn't discriminate against older and disabled people (and thus doubly against those that are both). Putting these people on unemployment benefit for the rest of their lives saves a few quid every week, but by lowering them into even greater poverty, we almost guarantee they cost us more in the long run.

3. People on Incapacity Benefit get free cars.

Politicians tend to have done enough research to know this isn't the case but it is a myth frequently repeated by lay people who have no other explanation for seeing wheelchair users driving shiny cars.

But nope. Nobody gets free cars. If you qualify for an entirely different and very specific benefit, Disability Living Allowance Higher Rate Mobility, then you do qualify for the Motability Scheme which enables you to rent a brand new vehicle suitable for your needs at a very cheap rate. But this has futtock-all to do with whether or not a person is or is not able to work.

4. People receive more money in Incapacity Benefit that a hard-working taxpayer earns at their job.

The Lady of Shallott reckons she had a nervous breakdown following Lancelot's rejectionBolsters. I'm sorry, but it is impossible to receive more in Incapacity Benefit than someone working full-time at a minimum wage job. What's more, with that level of income, your worker gets tax-credits and is entitled to other sorts of help in any case.

There is absolutely no financial gain in getting sick off work - unless you have a private pension or similar lined up and even then that only might make you better off than some workers; you are most unlikely to be better off than you would be if you were working. There are also other exceptions, but they are somewhat odd and apply to just a handful of people.

Possible explanations for people on IB appearing to be much better off than you are may include
(a) They use their money in a different way to you.
(b) Appearances can be deceptive.
(c) .... uh...

5. There are loads of people defrauding the system.

See above then insert a lot of emphatic swearing about what a total and utter pile of pants this is, even though it is widely believed and frequently implied by politicians on both sides of the House. It is just not true.

6. The 40% of people on Incapacity Benefit for mental health problems would be better off if they worked to keep their mind off their troubles.

David Blunkett said it himself when he was in charge of the DWP;
"If people... re-associate with the world of work, suddenly they come alive again. That will overcome depression and stress a lot more than people sitting at home watching daytime television."
Yeah, and perhaps he wouldn't need his guide-dog if only he ate more carrots. Yes I know it was years ago, but it was unforgivable.

The Loch Ness Monster has been claiming for a bad back since 1972 People incapacitated with mental ill health are even more vulnerable than those with physical impairments. The discrimination these people and their families face is altogether nastier; wheelies might struggle to find housing because of physical access, whereas we hear stories of people with mental ill health struggling to get housing because there's a children's play area in the close vicinity. And if they're not considered to be monsters, of course, then they're not consider to be properly sick at all.

These ideas are shockingly stupid. And yet people with so much power come out with such gems.

7. People receive Incapacity Benefit for minor conditions like acne and obesity.

There was a truly repugnant new story a few months ago when the News of the World used the Freedom of Information Act to get figures of the conditions cited on Incapacity Benefit forms. Whether any of the things listed were part of multiple conditions an individual had, it is unclear - I imagine they were, but it wouldn't have been such a good story if they'd said that.

Originally, the News of the World ran with "Benefit Scroungers too spotty to work" illustrated by the smiling face of someone with one zit and a wad of cash - subtle! Then we had
The Times "Too fat to work", illustrated by a big fat belly and The Guardian "Tiredness among 480 reasons given for being unable to work", among others.

Nobody receives Incapacity Benefit for a condition. We'd all agree that cancer is a serious condition, but whether it stops you working depends entirely on the severity of the particular set of symptoms you happen to have. No diagnosis would be enough. Indeed, it is possible to get IB without diagnosis if it is evident that you are incapacitated by symptoms which are, as yet, unexplained. Which is perfectly sensible; not all conditions have names yet, and those that do can sometimes take months or years to properly diagnose.

As for the obesity and acne, ha ha, if all else fails just point and laugh at fatty and spotty!

There are people with eating disorders, and occasionally a physical disease, which results in such tremendous obesity that a person experiences significant functional impairment and all manner of secondary health problems - including some which place the person in mortal peril. Such cases are extreme, which is why there are apparently only 2000 people in a country of 60 million incapacitated by this sort of problem.

As for acne, one has to stop thinking about spotty teenagers and consider acne in it's worst manifestation. Your skin is inflamed, broken and oozing blood and puss, pretty much all over your body but particularly your face, neck and torso. It is constantly itching and it is difficult to wear clothes which don't rub or add painful pressure. You have significant facial scarring and you feel you have been turned down my employers because of what you look like. Other unpleasant social experiences have completely shattered your confidence, so that you need to summon up courage every time you leave the house.

Rare, I grant you, but so do the statistics. Statistics which imply absolutely nothing about the validity or otherwise of these claims or the fairness of the system as it currently exists.

Hmm. I realise that (a) I've said much of this before and (b) it is unlikely I'm telling anyone reading this anything they didn't already know, but I had to get this out of my system. It was probably better for me than daytime television... Thanks if you read this far down.


Cheerful One said...

Thank you for this excellent post. The news on and reporting of Incapacity Benefit has been making me peevish for several days now, and it's good to have someone distil the twattery.

Nice pictures, too ;)

Anonymous said...

Well I was tempted to say "well I dunno about the rest of them, but you're a workshy lazy so-and-so".

But then I thought someone might think I'd meant it. So I thought I'd get round that by telling this over-complicated and convoluted story instead...

Lady Bracknell said...

Well said. Very well said.

Although I do feel compelled to add that some of the people who find themselves on IB after working for many years have been made ill either by their job itself or, more often, by the behaviour and attitudes of their employers.

I heard about a case like that only today. I can't repeat the details but, trust me, it would make your jaw drop. Man's inhumanity to man is alive and kicking. To what should be his eternal shame.

Mary said...

They get me coming and going. I went onto IB before I was 25, so I was a young person on Incapacity Benefit... I worked right up to the point I was signed off, but apparently that's neither here nor there. Grrr.

Point 4, um. I will not speak of Tax Credits except to say that I would sooner be unable to afford teabags (cf last post comments) than go through that again.

Point 4a, agreed. I for one save LOADS of money by not going out of an evening, not joining a gym, that sort of thing. My condition prevents me from spending money! I then spend it on things like a taxi to the doctors' surgery, which is evidently a sign of wealth ("well, I'd get taxis everywhere too if I could afford it" etc). Grrr.

Point 6, well, I think that in the right sort of job with the right sort of continuous support, a significant proportion of people with mental health problems will, if they are ready to take that step, get a "boost" from the fact of doing a job and earning their own money. But I agree it's a long way from that, to curing all depression by employment alone.

The trouble is that "They" see one and apply it to all. So they see one kid in a hooded top throw a brick at a bus... next thing, all kids are hoodie-wearing brick-throwing scum and a Danger to Society. They see one news story about a fraudulent IB claimant... next thing, all IB claimants are fraudulent scum and Draining Our Taxes.

The Goldfish said...

Thanks everyone.

Jack, I'm in suspense...

Mary, to be perfectly honest, I don't think that it is work - as the DWP would define it - that helps rehabilitation.

As Lady Bracknell says, a lot of people are made ill by their work in the first place. What may be useful is occupation and fulfillment but that's a kind of magical thing which would be a lot more tricky to help people towards than just getting them back into the working week.

However, the motivation here is about scapegoating and appearing to save money in a superficial way. So in other words, attempt to force sick people back into whatever work they can get and tell them it's for their own good.

As far as genuinely helping people with mental ill health - and with more borderline cases of incapacity with all conditions - the best thing would be to make the benefits system more flexible, allowing people to dip their toes, get paid for small amounts of work without losing benefits and so on. Right now it is all or nothing; you're either too sick to do anything or you're well enough to work full-time.

Naomi J. said...

Fantastic post. I'm trying to put together my thoughts on the way the IB stuff has been reported in recent days. I'm still too angry. You write your thoughts excellently - thanks.

stevethehydra said...

Re your point 2: there are plenty of people with congenital impairments who will never be capable of employment (i say "employment" and not "work" because, IMO, they're not the same thing, and IMO in an ideal (non-capitalist) society plenty of people who are not capable of being employed in the present employment system would be capable of useful work). Can these people not then get IB? If not, what (if any) benefits can they recieve?

Re your point 4: I suspect (although i don't have the exact figures to confirm) that IB + higher rate mobility DLA + higher rate care DLA + housing benefit and council tax benefit for a fully wheelchair-adapted property (which tend to have pretty high rates) would add up to more, possibly significantly more, than 35-40 hours a week at minimum wage. But, of course, DLA is non means tested, so a person with a comparable impairment who was lucky enough to get and keep full-time work would still get the DLA (and maybe even some of the HB, from the experience of a physically impaired friend of mine who was placed, while working, in ridiculously expensive temporary council accommodation)...

Otherwise agreed on everything :)

One thing that i think is important is that many people who are "unable to work" in this society would be capable of work if it wasn't for prejudice, discrimination and refusal by employers to make workplaces accessible or accommodate needs for things like flexible hours, etc, and IMO those people are just as entitled to IB as those who are not capable of doing a paid job at all...

Still, looks like both major parties want to abolish it. I see a new wave of unrest due to desperation coming up...

seahorse said...

" may have significant difficulty getting a new job.This is especially the case if you are now able to work but you are no longer able to do the sort of work you'd done previously."

This point is further complicated by the fact that when reassessed for work under the Permitted Work rules you are not even allowed to return to the job you used to do, even if that job is something you could build up gradually, and in some cases do from home. I repeat, for the incredulous, they actually won't let anyone take up the job they did before. Instead, under Permitted Work rules you have to attend a series of workshops, vocational training and suchforth. And if those options are not possible on health grounds, or not wheelchair accessible? If you can't do a full day? Well, you can't go back to work.

"Right now it is all or nothing; you're either too sick to do anything or you're well enough to work full-time."

I will say this, though it's not my experience. I have a friend who has recovered sufficiently to be working full time again after nearly three years on IB. She went through Work Directions, got a part time job, was allowed to keep her IB for the set amount of time, and when she increased her hours Working Tax Credits cushioned the blow and helped her through the stickiest financial patch during the crossover. Work Directions were also very supportive, offering counselling for interviews, CV form filling, and follow-up care. She is very appreciative of the help she received.

So, the system can work but not for everyone that's for sure.

seahorse said...

And of course, lest I forget, there are many people on IB and DLA who legitimately cannot work, and will not share my friend's experience of recovering full health and doing what the Government seems to want all people on IB to do...go back to work.

Anonymous said...

Thank you for stating it so clearly and eloquently.

The Goldfish said...

Thanks everyone and hi to people who've not commented here before.

Shiva - If we don't include DLA, which as you say isn't means-tested or related to work, then I can't imagine any individual making up the £220 for a 40 hr week at minimum wage just through IB and housing benefit.

But even if there were exceptions to the rule, the way this is discussed is as if people on Incapacity Benefit were enjoying significant material comfort whilst others were barely scraping by.

As far as congenital impairments are concerned, they can get IB but as far as I know they still get checked up on every three years. I happen to be one of these people who have never worked as I got sick while I was still at school. I don't think this is morally problematic, but the impression is given that people leave school and somehow opt to live on these benefits, like a lifestyle choice.

Seahorse, the permitted work rules are completely bizarre considering what they are theoretically there for. They do work for some, of course, but what sort of thing you're allowed to do and the timeframes involved are terribly inflexible.

I was paid to write one measly article, and I was receiving paperwork six months on - paperwork in which I had to promise I wouldn't do any more "work" for another eighteen months. I would love to be able to write bits and pieces for publication, sell stuff than I make here and there, even if I lost the equivalent amount of money in benefits. However, as it is, I would be in danger of losing all my benefits even though there is no prospect of my being able to enter even part-time employment.

seahorse said...

Goldfish yep, same here. Bastards. But if I want to go for 8 hour daily sessions at a vocational workshop centre nonsense place that's fine by them.

Mary said...

A standard 37-hour working week on minimum wage, minus tax and NI, call it £210.

Long-term IB (£81.35) plus under-35 Age Addition (£17.10) is £98.45 (source: Rightsnet).

Rent and council tax on a small bedsit flat: using myself a couple of months ago as the source, £90 p/w rent and £15 p/w council tax. This brings our minimum-wage worker down to £105 a week, or about £6.50 (gosh!) better off than on benefit.

Tack on a few work-based expenses such as bus fares to and from work (10 journeys a week at £1 a time brings our running total to £95), clothes that are suitable for work, a slight increase in food bills because you've got less time/energy/brainpower for hunting bargains and cooking-from-scratch, the occasional having to buy a sandwich because you left the house in a rush and forgot your packed lunch... and of course then there's the cost of prescriptions, including glasses, wigs, prostheses, etc, it just keeps adding up. You don't even get your £10 Christmas bonus or Cold Weather payments.

Plus, you're now time-poor as well, so you can't fill in loads of forms and spend hours in the waiting rooms of the CAB/DWP/council to try and scrape up what little scraps of assistance you might still be entitled to.

The Goldfish said...

Oh Mary - you have thrown down the gauntlet of maths! This is a little dull but;

Call it £203.50 for a 37 hr week if you prefer (it's probably more realistic. You don't get free prescriptions on IB, only on Income Support. So some of those expenses don't count (although granted, there are costs associated with being in work).

However, at 203.50, you're still entitled to HB minus 23.45 and a 7.5% reduction on your council tax (which I realise is just over one pound of your 15, but still).

So after £90 rent and council tax, you'd have £165ish quid next to our IBer who has £100ish (do they really get that? I'm on SDA so my situation is more complicated but AJ and I have about £100 between us after rent without DLA...)

On top of this £65 difference, your worker will be entitled to Tax Credits, but even excluding those...

Mary said...

on IB, you have the time to find out about and fill in the HC1 form (help with healthcare costs) and get awarded free prescriptions. And the HB/CTB forms. And this form. And that form. And the other form.

And then when the DWP or council or whoever screw it up or lose your forms, you have the time (during office hours) to go and sit and try and get the whole mess sorted out.

There's the time element financially as well. Changes to HB/CTB claims often take up to three months to sort out, sometimes even longer. You have to be able to bankroll all your rent and tax until such time as a decision is made, and that's not easy. You have to hope and pray that you'll get backpay.

It's a hell of a gamble.

The Goldfish said...

Mary, I think it's fair to say that moving between one position and the other is both stressful and potentially problematic.

However, the real reason to question this assertion that people are better off not working is because of the idea that some people see incapacity as an appealing option, that they will be significantly better off than the "hard-working taxpayer" (the phrase always used).

So whilst I wouldn't suggest that moving back into work is easy (you've done very well) or that living on minimum wage is a life of Riley, I reject the assertion, made time and time again, that people on IB are actually better off than those in work.

I know you have both expertise from your old job as well as a lot of first-hand experience with this stuff, and I don't mean to suggest that 37hrs on minimum wage is by any means a comfortable lifestyle.

Mary said...

To be honest I'm just being awkward, mostly due to my own inner conflict about the issue.

We both know that £20 this way or that way isn't the issue. A low income is a low income is a low income.

I have a foot in each camp. On the one side, I really do think having a job is fab. I think there's a lot to be gained from the satisfaction of looking at a payslip and thinking "I earned that," and that regardless of disability status, having a job should be encouraged. Particularly for those where the barrier to employment isn't disability, but an attitude of "as long as the rent and bills are covered, why bother?" There are some people I have met who don't realise that benefit money has to come from somewhere, and still more people who simply don't care ("So, if I have enough money to live on, and all my time to myself, and you have enough money to live on, but only a few hours a day to yourself, who's the moron?" is a conversation that'll stay with me).

On the other side, though, I have seen too many people crash and burn, emotionally and/or physically and/or financially, because they were forced into taking on more than they could deal with.

I could argue both corners till my fingers fall off.

Anonymous said...


Only just came across this excellent, wonderful post!

Thank you especially for mentioning the vulnerability and increased discrimination that people with mental health conditions face.

Sadly, people with mental illnesses (and autistics such as myself) tend to face greater discrimination and also far more accussations of faking / laziness etc.

Anonymous said...

I just wanted to say thank you! What a wonderful page! I myself am on IB. At 23 I was diagnosed with fibromyalgia and was on 25 different tablets every day for pain, other symptoms, then others to counteract the side effects and the doctors wrote me off with no hope of getting better, it got so bad i could not even put my own socks on. I lost yet another job due to the amount of time off I was having to take and in fairness they did all they could - shortened my hours, changed the time of day they were and were so patient with me.

Anyway after a very long, hard and financially straining 27 months - who can live on £65 a week? Which does go up to £100 a week but thats not enough to pay bills, its no where near the £1000 a month i was taking home when working! The debts have piled up just to buy food and pay bills. Who would CHOOSE that? While I couldn't work thats all I wanted to do, I needed the independence and the structure, but I was struggling to get downstairs in my flat to collect my morning post!

Anyway, I got off all the tablets, turned to alternative therapies which I was interested in but couldn't afford - being on IB, I slowly built up my tolerance to pain and physical movement and some light exercise (which hurts and daily tasks are sooo exhausting) and working part time (only 8 hours a week -but its something) to pay for a part time college course myself - no government funding. I HATE getting IB and don't get any other help but I cannot afford not to get the IB. The course was hard and demanding but I am now a qualified Reflexologist and just need to find the money for insurance and advertising so I can earn the money to come off IB. I plan on going to college again in September to do massage and ill be earning enough as a reflexologist/doing massage to come off the IB. The Fibromyalgia will never go away but I'm hoping by re-training in a career I am fascinated by I will be able to earn a wage over £80 a week and come off IB - high hopes - huh?

I also want to say you ONLY qualify for IB if you have paid enough in national insurance contributions - ie; you must have worked enough to pay NI and TAX to a certain amount. My friend is disabled and has been all her life - so she cannot work and has only been able to work for a short amount of time so she cannot get IB, she desperately wants it and cant, she has to live on next to nothing with income support for her and her daughter. Food for thought. Not everyone on IB wants to be, and will strive to get off it. Others desperately want it but aren't entitled to it (rightly or wrongly). My experience, its humiliating having to go and prove to a Dr that doesn't know me and makes you feel like you are a liar when its taken all my energy just to get there. Both times i've been i cried for hours. They drag up my past and reasons for my depression (hello -who finds any illness uplifting?) its emotional but also they poke and prod you where it hurts, make you do things your body cant do or struggles to do (bending, stretching, crouching, reaching etc) its not nice proving you need government handouts you don't WANT to be dependent on anyway.

Anonymous said...

SeaHorse.... you said "This point is further complicated by the fact that when reassessed for work under the Permitted Work rules you are not even allowed to return to the job you used to do, even if that job is something you could build up gradually, and in some cases do from home. I repeat, for the incredulous, they actually won't let anyone take up the job they did before. Instead, under Permitted Work rules you have to attend a series of workshops, vocational training and suchforth. And if those options are not possible on health grounds, or not wheelchair accessible? If you can't do a full day? Well, you can't go back to work."

I had help getting back to 'permitted work' and they encouraged me to do something i was doing before because I was confident at it and they wanted to make it as easy for me as possible and THEY even tried getting my old job back! Ive never heard of having to do training. I went to college through MY choice and wasn't even offered any training. I was told i could do permitted work for 1 year on IB no matter what it was as long as i didnt earn more than £82 a week or worked more than 15 hours 59 minutes. I was even told as my condition will never go away if at the end of the year I wanted to keep working (within the same rules) I could keep the IB if i got a letter from my Dr saying my condition will never get better but it helps me to earn that little bit. They do want us (IB'ers) to work and bent over backwards to help me. Just my experience.

Anonymous said...

Thanks for this.

Another thing that gets to me is the constantly repeated comment that people on Incap get more than those on Jobseekers' Allowance. The amount might be more to start off with, but we don't get free prescriptions (something of a necessity when you're off sick) or help with eg. council tax like people on JSA or Income Support do. No help with eye tests, etc. No other help at all, actually. So with all I have to pay out I'm left with very little, and I'm sure much less than JSA.

I am chased up regularly. I am off work because I had a breakdown. I still have hallucinations, panic attacks, and periods of depression so severe I sometimes sit under a table or between the bed and the wall for days at a time because that is the only place I feel safe.

My doctor's report and my psychiatrist and therapists' reports are NOT taken into account when I am 'examined'. The Gov. doctor I have to see has no specialist training in mental health.

I am asked things like, can I lift heavy objects? Can I climb a flight of stairs? The form I have to fill in every year is full of questions that cover physical problems. It even asks me if I need help going to the toilet.

When it comes to mental health there is just one little place to write in about all your symptoms and how they effect you. Oh, and depression, stress, etc. are all lumped together with 'learning disabilities', just to add to the insult.

If you have mental ill health you are thick, simple, or dangerous- this is the wrong thinking, the stigma.

The focus on Incap Benefit and the intention to get a million people off it makes it worse for people like me. I would love to do SOME work, but would need it to be part time so I can continue with treatment. Or work from home. If they could get employers to take on more middle-aged people who want to retrain, or use homeworkers more, this would get the numbers down legitimately, I'm sure.

Kim Hatton said...

Thanks for the posting this. More than once I have been made to feel guilty and worthless by the propaganda about being on IB. At present I am seeking work via Work Directions and was relieved by the post mentioning it here - though my experience is that the advisor isn't very clued up on mental health problems and, at times feel harassed. However, that could be my own paranoia.

Can anyone tell me if a] One keeps some benefits if one is found work via 'Work Directions' and B] if there any negative results if one decides to de-register from them for health reasons.

I always mean to ask these things but somehow get whisked past them by my advisor.

Anonymous said...

Excellent points, thank you!!!
I think another myth is that people on benefits are taking much-needed money from the country's coffers. This simply is not the case - I can't remember the figures but welfare payments are a tiny amount compared to, say, corporate tax fraud, or bank bailouts. Welfare payments could probably be secured easily by raising taxes for the super-rich.
It is certainly a myth that work always makes people feel better - most jobs, especially those that people with little experience are able to get, such as in factories or in the service industry, are doing no good to society whatsoever. The worker would be doing a better service to humanity doing voluntary work and staying on benefits. Furthermore, a lot of mental health problems are caused by work in the first place.
And it is grossly insulting of David Blunkett to assume that those of us on benefits sit around watching television all day. Most people I know on benefits read, study, write, care for the sick and elderly, volunteer for charities where they can, talk to friends and engage in their local communities. There is certainly no need to be "excluded" just because you don't spend all of your waking hours at work. And somebody with depression or stress will obviously be happier volunteering somewhere friendly and laid back than working, say, washing dishes or cleaning toilets for minimum wage.
We need to pay workers a decent living wage for important jobs such as these rather than trying to force vulnerable people into doing them for a pittance.

Alex said...

I don't know if anyone will bother reading this, but I'm on a DSP [Disability Support Pension] and my mum fought incredibly hard for me to get it. I have suffered from ME/CFS (CFIDS) since I was 8 years old, severely since I was 12, nearly 13. I missed my second year of high school (Year 8) as I was bed bound, hospitalised twice, and needed my mum's assistance to move about the house, or a wheelchair to get to doctor's appointments, and so forth.

During one of my (many) hospital stays, a social worker told us about the DSP. We asked for the forms... I had to fill out 5 forms, (with my parent's help, it's frequently too exhausting and/or painful to hold a pen) get a specialist to fill out another form, summarise my medical history, and provide proof that I didn't own any shares/assets, etc. (Quite ridiculous, what sort of incapacitated 15 year old owns anything besides an iPod, stereo or mobile phone?!) Then we had to go to a meeting with Centrelink (the Gov't agency in Australia who deals with pensions, etc.) I couldn't get out of bed, so my mum argued until it was decided that I did not have to attend, my mother could on my behalf. I got my pension.

It wouldn't be enough to live on. It's barely enough to cover my medication and other costs related to my illness/disability. But it makes things so much easier for my parents. We've spent thousands trying to get a diagnosis; no one in AUSTRALIA would diagnose ME/CFS until I was 13; back then 'children' couldn't get it. I don't know why.

Today, I'm 18; 19 in March of next year. I'll still be in high school - it's taking me twice as long to complete my HSC. Maybe longer. Now I'm well enough to do basic things myself, but I've never been able to manage a full courseload. I haven't been to a party, or celebrated my own birthday for over 5 years. Some days, all I can manage is to get out of bed, (without collapsing from dizziness) dress, and lie on the couch.

I would give anything to be healthy enough so that I could have a part time job, (or 3, like some of my friends) leave the house, and study, without having to spend the next 3 days in bed. But I can't. I don't know if I'll ever recover, and I am sick of the discrimination and bullying I face because I "don't look sick enough."

What does sick look like? Pale, with an IV sticking out of your arm? That was me, 3 years ago. Collapsed on the stairs at school, because you got so dizzy your legs gave way? That was me, 2 months ago. Deathly pale, dark circles under your eyes, sitting with your head on the desk because it's too exhausting to sit up at school anymore? That was me, last month.

What does "sick" look like? Who decides this?

My illness can be fatal. And after 5 years of living on 1-3hrs' sleep each night, waking every hour, the risk of heart problems, blood pressure problems, (and much more) has increased exponentially.

Please, please remember that people can be sick, without looking "sick." Please remember there are invisible illnesses, as real and as debilitating as any other.

Thank you for raising awareness, and, hopefully, making people realise that, particularly young people on the DSP would give anything to be healthy, and not dependant on anyone else.

Kim Hatton said...

I tried seeking help via 'Work Directions' but was advised by an upbeat young woman who was young enough to be my daughter and obviously working from a script giving me no confidence at all.

Shaft120 said...

Your post is a misguided striking out at a perceived personal attack.
You are probably feeling the weight of indiscriminate scorn and suspicion directed at IB claimers at the moment in political and social commentary.

I would suggest though that your anger is misguided. As with many Muslims, who are also probably feeling under attack at the moment, you personally may be entirely innocent. However, that is not to say there is not a problem. To use a medical analogy, unfortunately there is no way to cut out the cancer without damaging some healthy cells.

It doesn't take a genius to realise that there are ways to play the system. Everybody (well, those working) know at least one person where they work who has the ability to obtain a doctor’s note at the drop of a hat. Some even brag about how easy it is. In a system with little or no checks and balances, it is easy for a GP to avoid the unwanted confrontation with one of their patients by simply agreeing with whatever they are asked for. The reason mental health raises most suspicions is because it can be very difficult to diagnose without outwardly physical symptoms. It is much more difficult to fake a broken leg for example.

Now I know I'm not going to convince you, as in your mind you have pictured yourself (or another genuinely disabled person you know) as the object of my argument. This is your mistake. The anger from genuine IB claimants, politicians and society alike should be directed at the people who are playing the system, and at the system that allows it. Just as law abiding Muslims, politicians and society should be directing their anger at terrorist extremists and the system that allows them.

Shaft120 said...

My final point is with regard to your anger at the assumption of numbers by David Cameron. I'll surprise you here, by stating that I agree with you. It’s stupid to quote figures (especially as a politician or scientist) without having anything to back up such claims. However, I would make two observations.. Firstly you are wrong to dismiss people’s intuition out of hand. Many people you would have never thought of, have first-hand experience of the temptations and dangers of sloth and vice - but they may have just won the battle. Secondly, you are making exactly the same conclusion in your arguments. How are your unfounded observations representative of all IB claimants? You make the mistake of thinking you are more qualified to talk on such matters because you are claiming IB. You are not. It merely makes you biased, as is demonstrated by the flawed argument you have constructed.

I wish you well. I understand your anger; I just want you to break away from your victim mentality.

blackberrythorn said...

Thank you, I needed this. After working myself into a nervous breakdown around my A levels and getting sicker and sicker throughout my first degree I am now mentally ill with something quite complex and flummoxing. I really hate myself for not being able to work and getting rejected from every part-time job I think I might manage and feel guilty every time I have a day where I am not suffering acute symptoms. It's so hard, I don't need other people judging me too but I can't express myself like you do. So thank you for fighting our corner. x