That DLA Form

I fell in the kitchen while holding a hot (well, warm) cup of tea yesterday. I broke a plate and have strained some muscles. Nothing serious, but it could have been. My joints dislocate, and I have a lot of trouble getting up from the floor, and I was alone for the next five hours.

I attended an utterly fantastic disability studies conference last week – the Lancaster Disability Studies conference at CEDR. I plan to write about various things that came out of it, soon. For the purposes of this post, though, I’m musing on how I had to bring my partner as a PA, and how they had to take three days off work (out of holiday time, of course – no unpaid leave for carers), because I no longer qualify for direct payments for carer-type support, for financial reasons. I’m assessed as needing 25 hours of care per week, but I can’t actually have that.

I’m about to start my Disability Living Allowance (DLA) renewal form. For anyone who doesn’t live in the UK, and therefore doesn’t know about this, DLA is a benefit to help you with the costs of disability. It’s not tied to whether or not you work, but to how your impairment affects your need for care or mobility support. The DLA form is a huge, distressing form where you have to detail every part of your life in which you need care support and/or have mobility problems. Everything from how you are supported on the toilet, to what kind of help you need getting on and off buses. It’s mind-blowingly invasive. I was in tears just reading the bloody thing when it first arrived. Last time I had a renewal, I wrote 60 pages on this stuff. As I recall, my DLA form ended up longer than the Master’s dissertation I was also writing at the time.

Margaret Shildrick and Janet Price write about the DLA form and the way it embodies power relations within the bodies of disabled people:

The welfare claimant is controlled not by a display of external coercion but by continuous surveillance and by the insistent demand for a personal accounting that fits the rigidly constructed parameters of disability. The subject herself effects a normalising judgment on her own modes of being… [She] constructs her very selfhood in the process of normalisation. (p.436)

They go on to argue that disabled people then engage in self-surveillance through the DLA form, examining their own life and behaviour in damaging ways.

What kind of self-surveillance? Since ‘austerity’, perhaps more kinds than Price and Shildrick could have imagined in 1999. There’s the benefit fraud hotline that encourages a Big Brother-like, spying-on-your-neighbour approach that means that I wouldn’t dare leave the house without a mobility aid on a good day. (I don’t get seen on a bad day, of course, when I am in bed behind curtains where neighbours can’t see me.) The highly misleading headlines that talk about fraud in inaccurate terms, focusing on benefit cheats rather than on their own role in government anti-welfare propaganda. Other propaganda like the TV programme Benefits Street. The government’s own constant talk of ‘cheats’ as a distraction from their dismantling of the welfare state. All of this is going to be running through my head while I fill in the form that will determine my future circumstances in so many ways…. and it makes me very afraid. I’ve even considered not sending in my renewal form, and letting my DLA lapse. I won’t, because that would be really unwise – but the fact that I’m even considering it is quite scary.

So these two situations, the fall yesterday and the partner-supported conference last week, are on my mind. They’re two of the things that I have to include in my detailed self-surveillance through the form itself, my constructing of myself as disabled. I’m fairly certain that, even if I describe all the dangers, complications, pain and general failures associated with my ‘leaky body’ (to steal a phrase from Shildrick), I still won’t make much sense to the government agency responsible for deciding if I’m ‘disabled enough’ to continue to get my current rates of DLA. If they can even begin to get their heads around the fluctations in my extremely weird set of impairments, which don’t fit the way that disability is socially constructed by the state – as Shildrick and Price explain so well.

Which means my life may be about to change even more radically than when I lost the funding for my carers. I could well lose the car that I lease with my mobility component of DLA, as well as everything else that DLA is a ‘gateway’ for: mostly things that cost ‘the taxpayer’ nothing, but which enable me to access this hostile world full of stairs, and crowds, and buildings I can’t get into, and trains that aren’t on the same level as platforms, and enormous car parks that I can’t walk across, and people who are highly stressful, and toilets that don’t accommodate me, and sorry you have to go round to the back entrance, it’s only five minutes’ walk away

And even if my life doesn’t change in these ways, it has done for many, many people. As the government gradually replaces DLA with Personal Independence Payment (PIP), there is talk of huge numbers of of people losing this crucial allowance that gives them access to the world. Right now, the delays in processing PIP forms mean that hundreds of thousands of people are receiving nothing while they experience delays of at least six months and sometimes more, with people turning to food banks and charities because of the extra costs of disability. Even the government has said that’s unacceptable – but right now, that’s where we are. And if/when this situation is resolved? Significant numbers of people are predicted to lose their disability cost-related benefits entirely.

So I’m only one person, and I’m not that important, really. But with cuts to Disabled Students’ Allowance on the horizon, and the prospect of losing some or all of my DLA, and having lost my funding for carers, it does feel a bit like the state is out to get me. I’m starting to wonder whether I’ll cope well enough to continue with my PhD. I think SJ and I will probably find ways – we’re awfully resourceful, and SJ is amusingly creative when the excretion hits the air conditioning unit.

But I still don’t want to fill in that DLA form.

I referenced:

Price, J. & Shildrick, M., 1999. Breaking the Boundaries of the Broken Body. In: Price, J. & Shildrick, M. Feminist Theory and the Body: A Reader. Edinburgh: Edinburgh University Press. 432-444.

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The Girl OR you don’t have to be ill to suffer from chronic illness


P365, 19th Jan (I’m losing track of what number day I’m on now): The Girl proudly stands next to the coat stand that she put together herself, after going all the way to Oxford to collect it so that she could save the £10 delivery charge… Sadly, although my new XDA Mini S is fantastic and makes me incredibly happy, its camera does not seem as good as the one on my last mobile phone. I shall have to start carrying my real camera around with me again. The XDA is marvellous in every other way, though. I particularly love having my calendar, notes and Word documents all in one place. Now I just have to start remembering that they’re there.

But I digress. Back to The Girl. She’s wonderful, you know. (Nearly as wonderful as my XDA. *serious nod*)

Today we managed to have about a week’s worth of stress in four hours. Her fantastic attempts to help me, by finding out information for me about the hospital to which I’m being referred for ME testing/treatment, were met by me having a helpful panic attack. I’m nice and rational like that. Then we went out for breakfast, got annoyed with each other and came home again without actually ordering any food. I half-collapsed on the way back, threatened to run off and stay with my dad, shouted and cried, and went to bed.

Where The Girl, without a single complaining word, brought me sausages, eggs and buttered crumpets.

I think it must be just as hard to be taking care of someone with a chronic illness as it is to be the person who has it. Maybe it’s harder. I don’t know, as I’ve never been on the caring side of things in this situation, but it certainly seems like The Girl puts up with a hell of a lot. Not only does she have a lot of the same stresses as I do – the ‘will this ever end’ stress, the ‘how do we get to the shops this morning’ stress, the ‘why are doctors so crap’ stress, the ‘Nay’s in pain and it’s making her ridiculously cranky’ stress… But she also has lots of other stresses, like having to make my meals, bring me tea when I can’t carry things, clean up whatever I’ve spilled on the floor this time, sort me out when I’m in floods of tears, drive me places, sit through doctors’ appts with me, help me get out of the shower when I’m worried I might fall, make all the little decisions when I’m too tired or cranky to choose what to have to eat or which DVD to watch, keep the house tidy when I’m not well enough to clean, push me around in the wheelchair when I haven’t got the strength to walk very far, etc, etc, etc, etc…

Things are fairly simple for me, really, at the moment. I’m sitting around, taking things for the pain, waiting for appointments and seeing what happens next. It’s not easy, but I’m dealing with it. The Girl, though, has to deal with all the fallout from all that AND get on with her own life (this afternoon she’s off sorting out Production Week on the show that she’s directing). It must be extremely stressful. No wonder we’re getting a bit annoyed with each other. I’d like to be able to give her some kind of break, but my only choice is going somewhere like to stay with one of my parents, and that wouldn’t be particularly pleasant. Hmm. This must be given some thought.

Anyway. I’d like to take this opportunity to thank her for everything she’s doing for me. I can’t do much else right now, but I can do that.

In other thoughts, I went to book group with former colleagues last night. It was fun: we had some good discussion, and it was nice to see them again. One woman, though, whose sister has ME, now seems determined to ‘help’ me. She’s left a message on my voicemail saying that she’s got the number of her sister’s dietician, that she wants to give it to me so that I can go and see the dietician, and that her sister thinks I can “recover completely” from my illness(es) because I’m so young. Now, of course I appreciate the positive thoughts, and it’s nice of her to want to help. But how do I tell her, graciously, that I really don’t want to do *anything* that people ‘recommend’ just yet, until I have diagnoses and a treatment plan from my own practitioners? Yes, at some point it might be useful to talk about diet – but I will probably get that and more from the ME treament programme I’m soon to be going into, after I’ve had tests and been properly diagnosed. I don’t want to mess with anything right now, while I’m waiting for that. Especially since this dietician thinks changes in diet can cure anything, and I just don’t believe that (I think it can help a great deal, but it’s by no means the only thing, especially when you have more than one complex condition with a range of possible specific causes), and I don’t want to meet with anyone who will cause me more frustration and stress than I need right now. Any thoughts on kindly turning down this lovely woman’s kind but overly pushy suggestion, anyone?