I’ve been so saddened and appalled by the story that has been unfolding in your comments that I couldn’t sleep last night. Emma writes that “it is generally understood that you have to have two or three goes at the DLA to get what you are entitled to,” and indeed, from what you have all been saying, on both sides of the Atlantic this clearly seems to be the case. But what kind of governments have we got when disabled people have to fight in this way for the most basic forms of recognition? As the comments have been showing, this process is not the equivalent of a fairground ride – something you might “generally” expect to “have two or three goes” at – it is something so grueling and evil and offputting that the very thought of dealing with it makes one give up immediately. On top of everything else disabled people have to face – struggling and coping with the challenges of their conditions; dealing with an unadapted world in which their bodies or minds are treated as abnormal; the tricky business of simply getting through the day – they have to fight for recognition of their own identities? Repeat the process again and again, and be finally grateful for the pittance that may (or may not) eventually be awarded in the name of support? Bingo! You are, in fact, disabled! Look! You’ve won a prize!

What kinds of civil societies are these in which spouses and relatives are constantly expending their much-needed energies in defence of the identity and status of those in their care? Mothers, like Mary and Scamp and Lacer, repeatedly having to argue “but yes, my son really is disabled”; daughters and sons, like Lizzi and Oscar, doing the same for their fathers? A broken society is not the world of unmarried couples and errant yoofs that Iain Duncan Smith imagines, but a place where lawyers are being hired to secure basic forms of recognition for those with disabilities; where meagre state benefits are being fought for through costly litigation; and and where the sum of £18 will allow you subscribe to an online service promising to unlock the linguistic labyrinth that is the Department of Work and Pensions.

Believe me, I am under no illusions about things being rosier under the previous Tory administration headed by the esteemed member for Kircaldy and Cowdenbeath. But things can only get worse under a government whose plans for the wholescale decimation of the public sector are legitimised by a smokescreen of purported civil service “waste” and benefits “cheats.” In such a world, Sarah, Jen, Trialia and I – with our unfortunate inability to put on our bras, cut up our own food, make it down the street to the bus-stop, or on some days, just get out of bed – are cheating wastrels and we must be “trimmed.” And the trimming process seems purposely designed to heighten the sensations of dissasociation and disempowerment that one already feels acutely in this situation. Stick the knife in, DWP, why don’t you?

Jeanette hit the nail right on the head when she described the communications of the DWP as Kafkaesque. Claimants and agencies are effectively locked in a game of “yes you can” -“no I can’t” the aim of which is to make the claimant just shut up and go away. Many of you remarked on this as a strategy for weeding out the imaginary few who are not genuine, but the idea that those who are for real will simply refuse to shut up, is both cruel and utterly absurd. From the perspective of a government agency, I really fail to see the point of prolonging a process that is already incredibly involved and costly with appeals that — in their participation of the CAB, charitable organisations and the legal profession – can only enmesh said agency in further layers of complexity and expense. (In that respect, I found Xtiand’s comment very telling.) And from the perspective of the claimant, who is repeatedly being told that they and those who know most about their care, are effectively lying; that, whatever they, or their doctors or therapists say to the contrary, they can actually get in and out of the bath / turn themselves over in bed at night / put on their underwear / bend down without falling over / haul themselves unsteadily to a source of public transport – to these claimants it feels as if their own intimate knowledge of their own abilities and limitations – effectively, the last little shred of power they have left after everything else their conditions have robbed them of – has been wrested from their hands as well. Thanks for another kick in the teeth, DWP! Just what we need!

On a personal note, your comments have brought home to me just how far I underestimated the insanity of what goes on at the DWP, and I also must confess to a certain amount of foolish hubris where approaching the claim was concerned. Everyone – my mother, friends, those on my care team – kept telling me to get help with that form and I did not. “But I am someone who peddles words for a living,” I thought, “surely I can fill out a government form in a clear and straightforward manner?” But little did I know that my application would only be read for “trigger words;” that knowledge of such terms is limited to those who are willing to pay for it (see Rachel’s comment); and that the failure to use precisely the correct descriptive language for my mobility, limb weakness, balance problems, and exhaustion would result in those symptoms being entirely discounted. “Sorry, love, but the state does not recognise your own or your care teams’ honest, evaluation of your condition – you aren’t speaking the right language.” Josef K eat your heart out! I was equally unaware that the government regards words like ‘vulnerable’ and ‘unsafe’ as gambling tokens and that they are, in effect, coins that one has to feed into the DWP one-armed disabled bandit in distant hope of a pay-out prize. (see lizzi and roobedoo’s comments) Three wheelchair symbols! kerching!

What can such a system do but induce heartbreak and cynicism in everyone involved? Claimants, therapists, carers, managers, administrators, and those on the other end of the DWP ‘helpline’ like Robyn – who was subject to punitive measures if her calls assisting distressed claimants went on too long – all seem to regard the process with the same mocking pessimism. I can only sympathise with those who, like Deb now realise that she “went wrong because I told the truth” or Sarah, for whom it took three years to realise that it is “the trying not to be disabled, the managing and being the best you can be that hinders your applications.” And as Ruth writes,

“the process of convincing a stingy and skeptical bureaucracy of your limitations is humiliating and directly contrary to the positive energy required for healing and recovery. Your experience of the process as being nearly as bad as the injury itself is extremely common, and requires substantial psychological armouring and distancing to get through.”

Now I wasn’t lying when I said that the effects of the DLA process were second only to that of the stroke itself, just as I wasn’t lying when I wrote about the devastating and immobilising effects of neurological fatigue on that interminable form. I am lucky in that the stroke hasn’t left me with speech or cognitive difficulties; that it hasn’t affected my planning or volition; that I am someone who is quite willing to write bolshy letters to MPs, MSPs and national newspapers, and to carefully seek out advice from those who know the process better than I do. But there must be many claimants with serious mobility problems and care needs who lack these resources or support, or those who, like Lara’s mum or Roxsie, are perpetually shut out of the system because the very prospect of facing that dispiriting 60 page horrorshow is so bloody awful. Ruth and Colleen are both right about how the experience of focusing on one’s limitations can eat away at the resilience and strength that are absolutely essential to recovery from a stroke or other brain injury, or simply living day-to-day with any chronic condition that affects one’s physical or mental health. Through its punitive, opaque, labyrinthine and exclusionary processes, the Department of Work and Pensions is effectively placing yet another obstacle in front of those who already have far too many to deal with. And, as I said, given the axe-swinging plans of the present administration, things can really only get worse.

Yesterday evening, Tom returned home with trowels and forks and seed packets, my clothkits sun hat, a couple of hardy thyme and winter savoury plants, and the giant teacup planter he bought me for my birthday last year. These are the sad relics of our allotment, which we have now been forced to give up. Both of us cried a little: it was a painful reminder of how the happy rhythms of everyday life, and the many simple pleasures that we enjoy have been disrupted by my stroke. Tom has been transformed from a partner to a caregiver, someone whose business it has been to take me to the toilet, haul me in and out of the bath, put me to bed, provide my meals, clean up my mess, and generally jolly me along. And I am now someone who spends entire days on the sofa, who can only imagine what it once felt like to be busy, for whom whole weeks pass following same tiring ritual of exercise and rest, and whose biggest recent achievement is being able to curl up her toes a little. I would like to grow some vegetables. I would like to have the reserves of mental energy to be able to concentrate on, and develop an idea, for more than an half an hour at a time. I would like to spend whole days reading and writing again. And God, do I wish I could climb up a hill, or simply make it to the post-office and back without feeling like someone threw a brick at my head. I can only thank the Department of Work and Pensions for making everything I have to deal with at the moment just that little bit harder to bear.