Monday, 30 May 2011

WtB Podcast - 2. The Emotional Business of Form-filling


Deborah: Hello and welcome to the second Where's the Benefit? Podcast. The Where's the Benefit Podcast is now available on iTunes and if you've found us there, you may be interested in our blog at and our twitter feed @wheresbenefit – no “the” in that.

I'm Deborah, the Goldfish and today I'm talking to my boyfriend Stephen about form-filling. This last week we've been working on his Disability Living Allowance Renewal form. Disability Living Allowance or DLA is a state benefit which is supposed to help pay for the additional cost of being disabled, such as help getting around, preparing food, keeping clean and so on. DLA is probably the most difficult benefit to get and yet the government are wanting to cut the case-load by 20% and replace the benefit with something called Personal Independence Payment.

Stephen, I wanted to talk to you about form-filling because this is something that I don't think many people understand, the sheer emotional weight of this process.

Stephen: Yes, it's interesting, isn't it? Everyone has to fill in forms at some point in their life, whether it be a mortgage application or a marriage certificate, application for planning permission or whatever. Forms are a part of life, but when people talk about the stress of form-filling, I don't think they've known stress in form-filling until they have tackled the monster Disability Living Allowance form. In previous years, I have photocopied my previous answers to keep track of exactly what I've said because you get lost, especially coming from someone with an invisible chronic illness.

I have ME and as anyone with ME will know – and anyone who knows anyone who has gone through the process of living with ME, it's a condition which is, or has been and is still by some people, questioned. It's questioned whether people are actually ill, whether they're making it up, whether it's psychological. And I mean obviously, dealing with the DLA form, it shouldn't really matter if the condition is physical or psychological because either way you have symptoms and those symptoms need looking after. But that's easier said than lived by. It does feel like you're being judged and your entire life is being analysed to see whether you are worthy, whether you are sufficiently pathetic, whether you're doing all that you can possibly do to be as well as you possibly can be. Whether you are simply being lazy. All of those things are turned over and after doing even a sixth of the form, you feel like the next page is going to ask how you intend to top yourself.

D: I think because of the way these forms are worded, there's this sort of mentality that you're guilty of fraud or you're guilty of trying to swing the lead until you prove yourself innocent. And I also I think you're drawn towards presenting yourself as a kind of archetypal “good cripple”. You've got to have the right dose of suffering and the right dose of possitivity, because you're describing you're life...

S: And suffering and possitivity in the correct kind of way.

D: Yes, it's not at all “Social Model”, is it? It's very depressing. Do you think the questions that are asked are relevant to assessing your functional impairment?

S: The questions themselves seem designed for no-one and everyone. Do you know what I mean? In trying to cater for every single person, the questions about walking for example, nowhere does it simply ask, how do you have problems walking? It asks, how do you have problems with the speed of your walking? How do you have problems with the way that you walk? Do you walk with a slight limp, a light limp I think it says, a heavy limp? Or do you drag a limb – presumably after it's been amputated and you're carrying it around with you afterwards. Do you need physical support?

It also goes on to ask about how fast you can travel a certain distance. It says, can you walk 40 metres in less than two seconds – or something like that, I can't remember the speed at which they want you to be travelling. But what if you can't travel 40 metres? What if you could travel 40 metres if you were pushed down a flight of stairs quickly or you know. The lack of sensibleness in the questions, the lack of care in the questions, means that you're constantly feeling battered down by the answers. And battered by the questions. And it is amazingly depressing.

D: You almost feel like your particular condition doesn't count, because it doesn't fit.

S: Yeah, yeah, quite.

D: It strikes me that the process of this form-filling is the polar opposite to Cognitive Behavioural Therapy. Cognitive Behavioural Therapy is a sort of applied stoicism which teaches you to avoid negative thoughts and avoid negative behaviours which lead to those thoughts. And yet, there couldn't be a more negative exercise for focussing on your symptoms, your limitations, the losses of your life.

S: Exactly, it's exactly the same set-up as when we learn as good poorly people, not to answer “Hello, how are you?” with any sort of truth. You say, automatically, “I'm fine thanks, how are you?” Now, there are negatives to this. You do find yourself in a position where you are not able to be honest with others, but on the flip-side, you do find a certain positivity in...

D: I think after you've been ill many years, you forget that you're ill, effectively.

S: Especially if you're able to construct a life, carefully, in which you're able to achieve and be happy whilst minimising the damage done to you by poor health. And this is where you need Disability Living Allowance or any sort of disability benefit because you need monetary support in order to function in a way where you're not miserable all the time. I like to read very much. I've done a degree recently and that required a huge amount of reading. In order to achieve this, I bought myself a book-holder which means I can set up a book, lie in bed and not end up with pain in my arms and hands and shoulders from holding said book while I read. I still am limited, I can't read for a great period of time without my eyes getting sore and you know, various other depressing stuff that I don't like to go on about but which I've had to go on about in the form. As it is, I've got the benefit, or have had the benefit – I might not have by the end of this form-filling process – but I've had a benefit which allowed me to buy that book-holder and be able to read and be happy and productive without moaning.

D: As somebody with chronic illness, you don't wake up every morning thinking, “Goodness me, I'm an ill person, I'm out of work, I can't walk down the garden, I need a wheelchair, I need this equipment.” It doesn't actually occur to you and if it did, your life wouldn't be worth living.

S: Exactly. And not waking up thinking, “I'm a poorly person.” is a sign that you're doing well. That you're using your resources, that you're balancing your life, especially in the case of chronic illness. I imagine that it might be very different if you're only problem is that you're paralysed and wheelchair-bound, in that you might not be able to avoid thinking, “I'm paralysed” but I'm not sure that's true, I should imagine that people just get on. And the point about a disability benefit is that it's there to allow you to get on. It shouldn't have anything to do with how miserable you are unless you're claiming because you're so miserable you can't get out. And if a form makes you feel so miserable that you have to thump a pillow, or that you end up crying, then you end up having to claim for psychological reasons as well as the other ones that got you there in the first place.

D: We all pay National Insurance, so in many ways claiming benefits is claiming on that insurance. Everybody's entitled to it when those circumstances arise, just like any sort of insurance. But I can't really imagine an insurance claim that would be so emotionally loaded as this.

S: Well indeed. Recently my father was in a car accident and had to claim on his insurance. He had to even say that it was his fault the accident occurred even though it was quite obvious to everyone that the other driver was speeding. But because my father was in such a state that he wasn't able to call the police, it meant that he had to accept blame. But no-one, no-one on the insurance team, no-one in his home, no-one in the streets, no-one in the newspapers, no-one in parliament, talked about him like he was some fraudster, or liar, or even a bad driver.

D: Many years ago, my sister had to make an insurance claim on the grounds of a broken nose. It wasn't very badly broken, but it was broken and it wasn't like it was before. But she didn't have to write an emotional essay about how her broken nose had effected her. She just needed the medical evidence, she needed a photograph of before and after. So even with a medical thing, it wasn't loaded with the sort of emotion that these claims are.

S: And this is where I think that there's an error in relying on a form for these things, like this form. I'm sure a form could be created, but there needs to be more trained, professional and caring human interaction with people – which would also cut out the vast majority of these frauds that go on. Because any form, when a form is the one thing that is relied upon, can be used incorrectly. If you know how to fill in a form. It's like my exams when I was doing A-Levels, I knew exactly how to fill in the exam papers in order to get an A, because there was a set response, that if you went through the right process, then you got it. And we know, through filling out this silly form, that if you stick to just ticking the boxes - which is really all you ought to need to do if you're going to have some other, further response - then you don't get the benefit. Because you need to write in these horrible big boxes, “Oh my life's so awful, I can't do any of this, eugh!” otherwise they don't listen to you. And it's a war of attrition.

D: I should point out that the benefit isn't granted on the grounds of merely the form, but they do contact your doctor and so on, always. And very often they send out an independent doctor to check you out.

S: But that doctor isn't always that good. I've never – the one time I had a doctor visit me at home, he merely filled out the form again, but just asking my opinion about things at the same time. He was useless.

D: But it is, as you say, very much a matter of attrition. So many people I know have been turned down for DLA at some point for no particular reason. There's no pattern when it comes to conditions or mistakes they could have made. They simply test you, really, to see if you're prepared to fight for it. And of course the most vulnerable people, the people in most need of this help, are the least able to fight for these things.

S: Indeed and the least capable people, in this sort of situation where a form is so destructive, mentally – I mean, it's been destructive to me, physically and the amount of pain it caused is unbelievable. And that was with huge amounts of help from Deborah.

D: And your Mum!

S: And my Mum. And all of the times that have gone before, doing this form, means I've got all this experience to work on. But it's a huge amount of hours and pain and whatever. I didn't sleep properly last night, I have forms flittering through my nightmares. And that's coming from someone who claims at least to be relatively mentally capable and mentally healthy – although I do get a certain degree of anxiety from the pain and symptoms. But we have seen, at Blogging Against Disablism Day, we saw someone who had mental illness who hadn't reapplied for her – I think it was her benefit, it was a lady – she reapplied for her benefit because it was too much for her. How can that, how can that be? How can we look after people if we're looking after them with a form they're incapable of dealing with?

D: Of course, you've filled in your renewal form now, I filled in my DLA renewal form at, well it was Christmas by the time I sent it off, it took me a couple of months. But in the next couple of years, we'll both be facing the Employment and Support Allowance assessment and if the proposed changes go ahead, we'll both have to fill in the forms for Personal Independence Payment, which is going to replace DLA. So we're going to have to go through all this, all over again.

S: And the problem, it's not just the form. It's the process of filling in the form, of feeling judged and then, of actually being judged, of receiving a letter – Deborah received one saying that the fainting that she suffers from is something that she can “make reasonable measures to guard against”. Which yeah, it's fine, she can do that. If she doesn't ever get out of bed, or, et cetera. We're all judged, in the process of gaining benefit. And it's a soul-destroying process. And it changes us from being people to being a set of conditions, a set of problems and so this makes us disabled. We become worse off, through seeking help. Deborah will be all right if she only stays in bed, she doesn't have to worry about fainting. And that's not what a benefit, a disability benefit is meant to do for people. It's meant to help them. It's meant to make things possible that weren't previously possible.

D: Thank you very much for talking to me, Stephen. I shall see you later! And thank you for listening. As I said at the top, but I'll say it again, the Where's the Benefit Podcast is now available on iTunes and if you've found us through iTunes, you may be interested in our blog at and our twitter feed @wheresbenefit


  1. Thanks for your words!!! Really inspiring. I have had 6 months of being messed around now by ATOS. Terrifying and stupid of them. I have less than a tenner in the bank and I think they've stopped my payments again.

  2. Hi Anonymous. I noticed when reading through the 'Disability and Carers Service: Customer Information' booklet that came with my forms that you can request a 'Special Payment' which is essentially compensation if they make a damaging mistake. I don't know if this applies in your situation or not, but it might be worth investigating. Good luck.