Tag Archives: disabled

Bordering on The Ridiculous

So, I have my reply from the DWP, tucked into one of their notorious dung-brown envelopes.

I applied for a ‘Mandatory Reconsideration’, after their initial decision to massively decrease my lifetime Disability Living Allowance.

In a nutshell, according to them, I am a liar.

They even (and this kills me more than anything), use the word, ‘perceive’, as in, ‘You said you can’t do such and such, due to perceived pain and poor balance … yet …’

First off, I would love to know how perceived pain and poor balance feels (as opposed to the very real pain I feel, and have medication for), and secondly, how exactly is MS pain measured? Or indeed, balance?

Secondly, the decision of this mandatory assessor appears to be weighted heavily in favour of the so-called assessor who came to see me face to face in my house, and then proceeded to ignore me (but it’s ok, she was an A&E nurse and knows loads about MS).

It’s fascinating, how much she derived about living with MS, considering she was looking at her computer and checking her watch the whole time (she told us we were the ‘last of five or so and she was tired’).

What I experience is very real. No-one is on 600mg of Pregabalin a day (the limit) for nerve pain, if they don’t have nerve pain. And at my last three appointments with my neurologist, I have mentioned it doesn’t even touch the sides.

And as for balance? I have very well-documented balance issues, hence the name of my blog, which was created seven whole years ago, ‘Stumbling In Flats.’ The clue is in the name.

One of my first symptoms even before being diagnosed? Balance. Foot drop. Walking funny.

A large part of their letter concerned my work: I’m engaged, I walk, I converse. Yes, I do. But not always. There is a reason I work for my friend. There is a reason I was sacked from my last job.

It’s called Disability Discrimination and is heavily legislated, but it won’t stop firms, such as my previous employer, from sacking me the minute I had MS symptoms.

It would appear the DWP would prefer me to disengage entirely from society, merely to prove a point.

But which point/indicator on their scale would this qualify for?

NUL – Are You Dead Yet?

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16 Weeks Later …

disabledOur Government never lies.

So, when you receive an indefinite award for Disability Living Allowance, you tend to believe them, especially as MS is incurable and degenerative.

As it was for me back in 2012. The money, as stated, went towards the extra costs a disability can bring. And life went on.

We still had a lot less money than before, as my working hours had substantially reduced, but the DLA provided a cushion of sorts.

Until October last year when The Letter arrived. It was entitled, ‘Your Disability Living Allowance is ending’. So it wasn’t ‘indefinite’ after all – ‘this affects you even if your DLA has no end date’.

Right.

Imagine the uproar if people receiving the basic State Pension (by far the biggest benefit paid out – for costs associated with being older and probably not working) were suddenly reassessed:

DWP: You’ve been claiming your pension for years. Indefinitely, we say in Government Speak. Subject to change, of course.

Pensioner: Well, yeah?

DWP: Ah, you see, not all pensioners are the same. Some need more support but most need far less. So we need you to fill out a massive form, gather evidence and put yourself through a degrading assessment where we will decide on the spot whether you are deserving or not.

Pensioner: Okaaaaay?

DWP: And that automatic Winter Fuel Payment you get? You know, the one you have if you were born before 1953? Even if you’re a millionaire? Don’t worry, you get to keep that. Not worth the backlash. It’s only £550 million a year. We normally target disabled people to get some money back in to the coffers. Makes for the most sensational headlines. 

Everyone under 65 receiving DLA or PIP for MS will have MS for the rest of their lives. Yet, they are all reassessed. One-third will lose their benefit, according to latest figures. They’ve taken £6 million off us people with MS so far, and counting.

Everyone receiving the State Pension will receive the State Pension for the rest of their lives, no assessment needed. Neither are people on DLA over the age of 65 reassessed. It’s an automatic roll-over on to PIP.

I have absolutely nothing against pensioners, I’m merely using their particular demographic to highlight the gross injustices within the entire DWP system. Here’s the latest figures:

£171 billion spent on all benefits, of which;

£90 billion spent on the basic State Pension

£36.7 billion spent on disability benefits

£2-£3 billion spent on Winter Fuel allowance for all pensioners living in the UK

£550 million spent on free TV licenses for people over 75

The whole system seems somewhat arbitrary? The assumption is, when you reach pensionable age, you are due benefits, regardless of any other factors.

As for working, which most of us with disabilities try to do as long as possible, 46.5% of us still work. 10% of people with the basic State Pension still work. In fact, we are pushed in to work, no matter what our disabilities. Figures show at least 90 disabled people a month are dying after being found fit to work. Again, imagine the outrage if the demographic group was different?

My face-to-face PIP assessment took place yesterday. I had, after much consultation, filled in the huge form, adding as much information as I possibly could, a brutal and inhumane exercise in its own right. Apparently the one hour the assessor spent with me will count towards the Final Decision the DWP will make – to continue disability payment or not.

We’re told this kind of assessment forms but a small part of the DWP Final Decision. I’ve heard otherwise and I have no idea whether I ‘scored’ enough points (yep, that’s what they do, they score you).

The weird thing is, I am fighting to remain poor, to retain the same benefit between DLA and PIP. Mine is not a new claim. If it wasn’t so tragic, with the possible outcome being so life-altering, I would laugh.

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Arguing With Parked Cars …

disabledDisabled parking.

The only time we’re visible in society?

How many times have you exited your car in a disabled space only to be confronted by an angry person demanding to know the exact nature of your disability?

This happened to me the other day.

I took my mum out – walking stick, disabled parking badge, etc – and parked in a disabled space. Two. TWO people in cars (not disabled, waiting for ‘disabled’ people) got out their cars and harangued us.

‘Erm, yes, my mum can’t walk far (gestured to stick). How far? Really? Are you serious?’

They were.

‘Well, as I said, my mum can’t walk that far, and for your information, I have MS.’

‘Oh, yes? You expect me to believe that?

But who am I to judge?

Fast forward to our next stop, near the chemist. Three disabled spaces, handily near the local supermarket. So, obviously taken up with customers of the local supermarket. Without disabled badges.

But it’s ok. I spoke to them – they were only parking for five minutes – enough time to get into the supermarket, grab a pizza, bottle of wine and latest copy of Hello!.

Only five minutes. We wish. If only they could be disabled for just five minutes.

And there’s the nub. These people see disabled spaces, make a rational decision and decide that their need is greater than ours. Is that the only time they think this way? Or is it endemic in society?

Disabled spaces are fair game and our government has led the way – we are all wastrels, scoundrels, beggars. With this blatant misuse of disabled spaces, the general public send a stark message:

We don’t care. Prove yourself.

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Sanctioned Deviance

TalcottIf you’ve never heard of Talcott Parsons, you’ll almost certainly have felt the crushing effects of his ‘sick role’ discourse within medical sociology.

He’s the bloke who argued back in 1951 that being ill means you enter into a state of ‘sanctioned deviance’ and are therefore no longer a productive member of society. And there’s more.

My wicked deviance (for I am legally disabled) must then be ‘policed’ by the medical profession. In short, I disturb the normal social function of society. Chortle. Me?

I’m writing about this as I seem to fall into the camp of an Invisible Illness Unless I Do Something Spectacular, such as fall flat on my face or play pinball with walls. When my condition is obvious, there is an allowance so long as I play by the rules. 

Yet when it’s invisible (extreme fatigue, brain meltdown, endless nerve pain), I’m either faking it or playing up to it. I can’t win. I’ve variously been told to give up work, to find a ‘proper’ job, to go on benefits, to stay at home and watch telly. Wish they’d make their minds up. 

I’ve recently heard, ‘but you’re taking a Master’s, you can’t be thaaaaaaat bad’. The underlying insinuation being ‘oi  you lazy sod, no more malingering, be more… productive rather than floating around in hand-knitted scarves writing about trees and ladybirds’. 

Regular readers will know two things about me: first, I struggled badly during the last two years of my degree as I was going through a perpetual cycle of relapses. Second, I no longer have a set career path for a whole host of reasons. So why not push myself into something that will challenge me on every level? In all honesty, it has taken me to the limit. The emails between me and my tutor confirm this – full of doubt, fears of failure and a sense that I really had aimed way too high.

I have since settled down into academic life and my tutor is no doubt relieved not to have to handle any more tracts of self-analysis. And they were pretty badly-written streams of consciousnesses, natch.

So I challenge the sick role wholeheartedly, as have many critics. I am a productive member of society. I am single-handedly raising a well-rounded (and opinionated) Teenager. I run my house well. The cat is always fed. I work. I study. And I always turn up on time for my monthly blood tests at the doctor’s surgery. Early, in fact.

Yet there still exists in society a great desire to hold onto this sick role theory. It suits them; we can be parcelled and put to one side ready for them to cut our much needed support and mock us. We are in the stocks and right now society is taking great delight in chucking everything rotten at us.

Is it just me or does dear Mr Talcott bear a passing resemblance to someone else? Must be the moustache.

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