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.
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.