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.
Hmmmm – this is just too bad……..I suggest that you forward your post to as many relevant departments as possible – newspapers too.
I am really sorry that you have had to give up the allotment. Please put your name back on the list – you can always say no thanks if it comes up before you feel able to take it up again – I had a half plot which may be worth considering for the future till you are ready for a full one again.
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*GINORMOUS HUGS FOR YOU AND TOM*
Now regroup, and plan your attack. I often faced these bureaucratic frustrations as a social worker for refugees – it is so important, as an intelligent person with a modicum of resources, to share the experience with people who have limited language and other abilities trying to navigate the same system.
Your energy must be best put to use to #1 heal, and #2 get the assistance you and Tom deserve, but I hope at some point you will detail this process (as you are doing here) and make it public in the hope that reforms can be made. As you say, processing the same application/appeals 3 times surely is not the best use of the agency’s funds…
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Ah, Ms. Kate. I see you have your warrior pants on. Thank heavens for you and your words. They may not hit the jackpot immediately, but your reports are not useless. As long the disabled are perceived as weak and stupid, they will be taken advantage of by the powers that be. Disenfranchising populations is easy politics unless there are folks like you raising the pen and hollering like hell.
I know you feel exhausted more often than not, but you never cease to amaze and inspire.
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hey kate — so sorry that you too need to go through this nightmare , of being disabled and having to prove it— its a bad place to be and then to have to fight for what should be forth coming is too much
– don’t give up – have every care giver that had worked with you send in a letter – I mean every one – every doctor , every physio and ask them to write in detail
– I am in ont , canada – after working for 34 yrs as a psychiatric nurse I became depressed — this did not stop the forms, to fill out rolling in[ like 32 pages for the gov’t disability pension] etc , etc — also ‘ independant’ assessments by psychiatrists of their choice, who asked me questions that I had asked my patients , over and over for 34 yrs
– every time a form arrived I felt afraid and humiliated- wondered if I would have the money to keep my house or look after my son
– thats the way the system works – pay into insurance for years , but watch out if you try and collect
– everything was finally settled – yearly reports go out to them and they finally leave me be
– sure not what you need to feel good, eh?—-take heart , you are a strong person , are loved and cared about,are bright and creative – do a little of what you love each day
– there are so many people who have nothing in their life to be passionate about , and no one to love them – what you are feeling , all this sadness anger and frustration , is part of the normal course of recovery “believe it or not ”
– you were too sick months ago to broach any of this – all this anxt means recovery LOL—————————thinking about you and feeling for you
summer cheer —pat j
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I have been following your blog for some time now, and when you spoke of missing your garden it put a lump in my throat. I am sorry you are going through such difficulties. I echo the words of encouragement that have been eloquently said by others. Just know that you have people wanting the best for you. I care about you and what you are going through, even though we are strangers.
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The only thing I can give you is a big big huge.
Take care deborah
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To lose the allotment that you waited so long for seems like an unnecessarily cruel blow.
Every time I read a post from you I am reminded that “disabled” is the one minority that any of us could join, any moment of any day.
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Dear Kate
I am a lover of your blog, but a silent one. I am so sorry that you are going through this now it is disgraceful. I am appauled. When I studied social policy in the early years of New Labour I remember reading a paper I think in Critical Social Policy on the non-take up of benefits. I am sorry I cant remember in general terms but I remeber that there was an estimated 25% of elderly people entitled to benefits that didnt claim them. I know this is nothing to do with you, but it turns the discoure of dependency and cheats on its head. Indeed, the concern should be the quality of life of such people…. All the best to you and Tom, Jennifer
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Dear Kate, you are absolutely right to be hurt and angry. I do hope you can channel that energy to 1) get what you need and 2) help others get it by spreading the word. I have no idea how the process is here in France, though I do have a faint hope it is not as bad as what you are describing, but I would like to point out that the mere fact that I do not know is symptomatic of how little most people know about what it is like to be disabled. And that ignorance is precisely what makes such experiences as yours possible : it is so much easier to talk about cheats and frauds when no one knows how unfair and gruellling the whole system is. Words can make a difference, in the right place : recently the movie Indigenes was able to trigger a decisive change in the pensions awarded to the veterans from the former French colonies, who for decades had not been receiving as much as their French counterparts. So please, take care of yourself, for your own sake, and maybe, later, also for that battle’s sake, so you can help make a change in all that unfairness. I’m wishing you all the best luck, patience, fortitude and sense of humour so you can face all of it. I loved the chrysalis metaphor in one of the comments, and I’m sure you will come out of it as a changed, but stronger, more thoughtful and lovelier person.
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And I beg you, for your own sakes, once you’ve put the wheels in motion to get some help with this, do something that cheers you up, something positive and life affirming. Look after yourself, try to put it all aside and make sure there is something good and fun and heartening in your day. My way is comedy (and of course knitting!), a good laugh is wonderful, I’m sure you have your way.
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Sorry I haven’t read the comments before posting, but last time engaging with this whole issue gave me a migraine… so I’ll be brief and go away. You and all the rest of us out there really do have my deepest sympathy, the DWP is either deeply evil or deeply incompetent, or perhaps a toxic mix of the two. And I can relate to what you said about it feeling like a second stroke – when I got my “you’re lying” letter from them I cried for a whole day… they wrote such blatant untruths about me and it was like my worst fears – of being told it’s all in my head and that I’m making it up – coming real.
I find it highly ironic that the government is planning to hand over funding control of the NHS in England to GPs, despite not trusting them to judge whether or not a patient is disabled…
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Do appeal. It’s a bit like having a really good essay rejected, by a total pedant, because of a few punctuation errors, or the wrong colour of ink. Once you get your head round the language, you will eventually get there.
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it is awful, and completely energy-sucking, to have to deal with petty bureaucracy on top of everything else. when i was filling out my DLA forms, i was told to imagine myself on my absolute worst day ever, and to rate my abilities as if i were speaking about that day & that day only (the way my disability affects my life is intermittent & can be hard to quantify). i think there is a tendency among some of us disabled folk to “downplay” how much help we need – we’re used to just having to struggle on & cope as best we can. unfortunately, this isn’t a trait that helps us be recognised by the DWP as someone in need of assistance!
i will keep my fingers crossed that everything works out for you – and i’m not that far away, so if you ever need help with anything at all, please let me know!!
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That is exactly it ! The very worst of your worse days. It isn’t ‘lying’ or ‘cheating’, it’s telling the painful truth. You don’t know how many worst days you will have, or how few, but those are the days you need to prepare for.
I’m sure that there are “benefit cheats” but I think they are few and far between. That doesn’t make for a very good cost cutting justification soundbite though, does it ?
I often wonder why our society hasn’t evolved enough that the care of those in need is automatic and unquestioned. I suppose it’s that humans are basically selfish. A mystery why so many can’t make the small leap of imagination to see themselves disabled and need of help. As we all know, in an instant it can happen.
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Oh Kate! go give ’em hell.
and you are SO busy right now. You have to ‘rewire’ your whole brain! It’s just a different kind of busy and these FOOLS in the government are saying a load of BS.
You have lots of people who love and care about you. You have such a full life, although I understand that it’s not how you want it to be right no. So I hope you feel better and I hope that you’re enjoying your life despite it all! It’s just a time/waiting game until things get better.
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I’m so sorry that this horrible department is sabotaging your efforts. Chin up, have a good rest, and set off again, in the breech.
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I’ve only ever commented before right after your stroke, but I had to say that my heart breaks for you losing the allotment. Don’t give up!
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The DWP is just one particularly bad example of a tick box, software-led bureaucracy which has become all about the process, with the purpose forgotten.
My suggestion would be to re-charge emotionally and physically a bit, before you take it on again. Then use expert assistance, to improve you chance and bolster your resilience.
Wishing more power to your elbow, in all possible ways ;-)
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I know how you feel, the frustration overwhelming you, but you thinking that a rational person will understand until you find they do not. Here is my experience, I adopted my daughter from China when she was 2. She had a bilateral cleft lip, initially repaired in China. However, she needs additional surgeries and procedures about every year or so. Her first surgery was denied by the insurance company as cosmetic in nature since some of the work involved her nose (a common problem with kids who have clefts). She was 6. Her surgeon rebuilt her nose since she had no cartilage or structure at the base of her nose. But it was considered a rhinoplasty or nose job. I went through 10 months of appeals with our insurance company before it was finally completely approved and paid for. The second year surgery went off easily. This year we worked for 2 weeks before her scheduled surgery to get approval for laser treatments to revise her scars on her lips and face. Repeated requests for the same info was sent but not found by the insurance company. Finally they sat with her file in review for 3 days, including the day of her scheduled surgery because they couldn’t decide if it was medically necessary. 24 hours AFTER her scheduled surgery they informed me it would be denied. Good thing I postponed the procedure. I will still fight them, but at least I’m not looking at thousands of dollars of medical bills while I’m doing it. And her case manager at the insurance company already told me that I should keep appealing beyond the second level as that is when they see the most reversals on the early decisions. So in other words, they hope you quit and go away. I’m NOT quitting nor will I go away. I hope you too will muster the strength and endurance to continue rattling their cages until you get what is your right to have. Best thoughts and wishes.
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Dear Kate,
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I am so sorry.
Last spring I was hit with a terrifying episode of severe vertigo. So severe in fact that when I woke and got up the spinning was so bad that I promptly collapsed– I could not walk or use my limbs properly. I made it to Emergency that day and all the bad things were ruled out but no one was sure why it had happened. Anyway it went on for a month or so, me with the room spinning out of control– I still had to teach my classes– I would hobble into class on my cane (because without it the whirling would send me falling to the floor) and sit in the chair trying to lecture as the classroom occasionally spun around me… I remarked to one of my students that it was like being on the “merry-go-round from hell.” I live alone, and far from family or close friends, so with no one to care for me or help me, I was terrified. I wondered what would happen if my life remained that way… My students (university) were remarkably kind and would walk me back to my office after class- some even taking my free arm so I would not topple over. I was 30 years old, young enough to seem big sisterly to them, and yet I felt so old and sick.
I was lucky- I found an Ear specialist who found the root of my vertigo and treated it with physical therapy. Slowly the rooms stopped spinning, and I was able to put aside the cane, and I could take my dog on a walk again (instead of having to beg a neighbor to walk her.) My condition turned out not to be permanent or disabling and I was able to finish out the semester. I am still a bit tired from the whole thing (the vertigo was worst at night. Sleep was dangerous- I would spin in my dreams.) but okay now.
But for that month I lived in terror of what would happen to me if I was really, truly ill or ended up disabled. Unable to work and support myself. Yes I live in a modest flat and don’t make a lot of money as a uni professor, but its my flat, and I love my work, and I like being able to support myself and my dog and cat.
Illness is terrifying. Disability much more so. I see it with my mom, who is disabled and in a wheelchair due to arthritis- she cannot do the all things she once used to do, but resolutely she keeps trucking. She once said to me “It hurts so much- I always hurt- but the day I stop reading, cooking or knitting is the day that I leave this earth– so I keep on cooking, reading and knitting.”
For the one month I was ill I had a tiny glimpse of what it is like to be seriously sick and with no safety net. I cannot imagine what you face every day, and manage to do so with grace and goodwill. Its okay to be angry. One should be angry about the state of things in society. If anything, turn it into something constructive- something good.
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I feel for you and am sending strengthening thoughts your way. My heart goes out to Tony; it is hard to become the caregiver of your partner (voice of experience here…).
A heartfelt hug from across the pond,
Loretta
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It is unbearably saddening to me that you and Tom had to give up the allotment, after reading all the joy it brought you last summer. Wishing you all the best dealing with those government bastards. X
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Please excuse me, what is an allotment? Is it a community garden? I’m sorry, I live out here in California and don’t understand the term. Kate, you’re brilliant! Please don’t give up. Perhaps when the horrendous task of this bureaucratic nightmare gets to be too much for you, you can retreat into your creative work. Cats and creativity have always been my saviors! You are a great inspiration to me. I’m cheering for you and sending thoughts of strength your way. Kelly.
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Dear Kate, I am so sorry about your allotment. I know how much pleasure it brought you and can imagine what a wrench it is to give it up when you have lost so much already. As for the DLA, I can’t express sufficient contempt for such a system, for the politicians who support it or the people who toil in it. Systems like this are a pimple on the bum of any modern nation.
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So sorry for all you are going through with the DWP. I, too, thought that assistance would be better on your side of the pond. Sending love and strength to you and Tom (and a chin scritch for Jesus).
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I weep with you both for all the losses, big and small. Strength to you, and also to Tom. Caring is not easy, and seeing the person you love suffer is physically and emotionally and all of the small indignities is like the death of a thousand cuts.
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Sooz said it so well, I will just have to ditto her. I also think of all the people in the world who are not as articulate as you and are even more discounted and invisible. Do not give up. In the end it is sometimes only determination and persistence that gets us through the hardest parts of our lives. You can do it. And I know you will. We all care about you a LOT.
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I don’t want to write those words that most of the comments have as their startying point, but they are so uppermost in my mind. Oh Kate! Oh Kate, I so wish things could be different. The loss of your allotment has struck me so much more than the other nightmare – I suppose I am a little more used to the horrors of government (I watched Terry Gilliam’s Brazil again this week, what a timely reminder that is!) – but it is the surrender of your everyday pleasure, your hard won patch that made me so very sad. Platitudes help not, but it will get better and I hope you can keep that glimmer in your mind’s eye, even if it can’t be seen over the horizon yet. You are more than this, you will prevail despite the awfulness.
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Hi Kate,
Your words are so powerful and painfully correct, I live in Australia and I doubt we have any different experiences here. I have been touched with similar experiences but in no way the same as you. What society allows their weak, and sick to be treated like this? It is abhorant and morally wrong. Your posts are an inspiration, I am glad your stroke has not robbed you of some of your joys, knitting, writing, reading and clear logical thought! I want to say, keep fighting and get them honest, but really I think it would be better to do what is right for you and Tom, just know that my thoughts are with and I hope that in some small way that is a comfort. Best wishes Anne
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I’m so sorry. I don’t know what else to say. This is so horrible, and so unfair. I have been following your illness and your recovery, and am constantly amazed and inspired by your positive attitude in the face of such trials. It appalls me to my very soul that you have managed to overcome so many enormous issues with your own physical state, and yet the first time you sound defeated is when dealing with the the very people who are supposed to help you. I feel like punching someone!
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Please don’t take your anger at the low-level bureaucrats who have conduct the interviews and read the actual forms. I’ve known a number of people in the US that have been on that side of the desk. They never could help as many people as they wanted because it would cost them their jobs to do so. The problems are with those who write the regulations, those who go on TV and say that people who take govt money are mostly frauds. Being respectful to the individual office workers will get you much further than being angry. Please be sure to direct the (very much justified) frustration and irritation at those who call people who cannot work leeches on society. My sympathies are with everyone who has had to apply to these agencies but too often anger gets directed at the easiest target and not at those truly responsible.
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I’m so sorry you’re having to deal with all this. It’s disgraceful, it really is. And I’m so very sorry about your allotment. Sending my continuing heartfelt wishes that your recovery continues and that you get the help you should be entitled to.
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as for veg
http://www.phantassie.co.uk/
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that’s a wrap.
no, seriously, josefina, this is your movie script. write it.
xxx
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I couldn’t agree more Kate, every time I hear that someone is collecting milk bottle tops to pay for a child’s electric wheelchair or a friend is told that maybe instead of having a cup of tea to quench her thirst she could moisten her lips with a damp face flannel thus removing the need for a PA to assist her to the toilet I want to scream what kind of society is this?!! You have said it much more eloquently, I do hope someone in the press uses this to raise awareness of the godawful system we have developed. In the meantime I wish you both strength. Caroline x
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I am so sorry my dear–I know this is so horrible. And I was very sorry to hear about y’all’s allotment, what a wrench. I am sure someone else was really thrilled to get one earlier than they expected and maybe it will help them through a difficult time of their own and you and Tom will be able to get one back soon.
I agree with Anne Boleyn, we need action!
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Kate, I’m so sorry to hear this. I’m in the U.S., so our experiences are rather different, but I’ve had my own frustrations with being unable to get health insurance due to pre existing conditions – which conditions are of course WHY I really need health insurance. State insurance has its own hurdles and hoops to jump through, and I’ve been at my wit’s end.
I wish you all the best. It’s unfair and ridiculous and painful and humiliating, and it shouldn’t be.
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Hear, hear!
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I am so sorry to hear about the allotment, yet another loss.
I think that there is something that has gone on that has turned the social model of disability inside out – all that crap about how the new systems are to empower people by focusing on what they can do, not what they can’t do. That’s not empowerment, it’s denial. Or worse than denial, it’s accusing the claimant of lying about their situation. I have some small experience of this – being congratulated on having at least damaged my left, not my right arm, so that I could still write and even better type, if a bit slower than usual (let’s not worry about my being off my head on opiates and exhausted!). But I was in the fortunate position that I had someone to blame, the driver who knocked me off my bike, for my condition, and eventually got back all those expenses without having to ask the state.
My very best wishes, Kate.
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It’s no different here in the States. In fact, because of our lack of a social safety net, in some ways it’s a lot worse. Having a traumatic injury then having to pay the hospital costs which can run into the hundreds of thousands of dollars. A very close friend has severe case of psoriatic arthritis and psoriasis. His arthritis is more like very severe rheumatoid. His hands have curled into themselves, some of the vertebrae in his back and neck have fused, even his toes have been deformed from arthritis. His illness developed when he was 8. Even though his hands curled in on themselves, he was so sick he nearly died, he has limited mobility, if he does too much he gets migraines, he just turned 37 this year, he was turned down for Social Security/disability at least twice before finally being accepted. Sure, Medicare/Medicade pays for his meds but he gets 700$ a month for disability payments and gets no assistance in food stamps because his Dad forces him to pay 200$ a month in rent. According to our system here in the States, he must have extra income coming in from the ether to pay the rent his Dad requires, which is why he gets no $ in food assistance. It’s a complete cluster here. It took him nearly a year to finally get on Social Security/Disability. He was so incredibly frustrated.
There is no reason for this to be so hard. Having gone through the stroke, and the process to recover is frustrating and draining enough without having to go through this too. Hang in there. Hopefully things will start to go better for you.
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Unfortunately the bottom line is that the vast majority of the population, who, for now, live lives untouched by disability, are not prepared to adequately fund DLA and associated benefits. A lot of people are selfish like that !
We got, for my son, the highest level of DLA at the first attempt. I think this was a fluke, as we were congratulated by Paediatricians, Physio and Occupational therapists and the SCOPE field worker ! I did it all without having to deal with a social worker. It was weeks of work and self motivation to achieve that ! Still not sure how i managed it.
Now we are tied to a social worker simply because there is no other way for us to access the services my son needs. Depressing, but necessary. Disabilty means having to suffer a life filled with ‘experts’ telling you how to run your life.
The only reason I feel able to deal with it all is that my son benefits as a result of my efforts, and will continue to do so in the future.
No criticism at all here, but can I please caution you to use your energies carefully for now. Concentrate on getting what you need, with help. Then turn on the system.
All the best, Em. x
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Kate, I’m so so sorry that you are going through this, no wonder you feel so low, it sounds both horrendous and bizarre. And to have to relinquish your lovely allotment as well (hopefully just for the time being?).
Please rant away, we are all listening and sending you lots of support and love.
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nor do I want to further aggravate your situation, BUT I think these agencies are shits. there, I’ve said it.
However, you MUST appeal – and get all the advice you can from CAB etc. As a previous social worker, I KNOW you are entitled to this money, but cannot offer any other advice than that. All of us are tied. But, I digress.
Go. For. It.
lotsaluv, Karen
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When I read your previous post I gritted my teeth and sat on my hands. I figured that you would probably receive a deluge of replies and what was the point in saying something that many people would tell you anyway? Well, that was fine and fair then but…
Years ago I injured my back. A traumatic and prolonged period off work followed. As you rightly point out, it isn’t just the physical trauma that affects us but having to deal with such relentless, implied accusations of being fit when we clearly are not that sinks us into depths of misery that not even the enormous physical challenges have succeeded to achieve. I didn’t have to deal with the DLA process (funnily enough, I decided not to… I wonder why…) but with an equally degrading procedure conducted by my company’s insurance which was aimed at figuring out ‘how best to help me’. The best way to help me was to send a letter telling me that I would benefit from returning to work immediately. At the time, I could barely lift myself off my bed unaided and still needed help to brush my teeth and wee.
Somehow, the insurance company’s doctor, with all of her computerised apparatuses, had not detected these difficulties. I could squeeze two metal tubes with my hands, surely I could sit at my desk for 15 hours as normal while jet-setting between countries, wheeling my own luggage, as was expected of me at the time. The decision came with five minutes’ notice; I found myself losing all of my income despite the protestations of my GP, the three neuro surgeons who were curing me, one from Harley Street, two from a BMI hospital, my physio and the orthopedic surgeon who had also seen me. I slowly started a return-to-work programme 5 months later. It took another 21 months to return to work full-time. The financial hit I took was immense, to understate, yet I was supposedly ‘fit to work’. Why thank you, I preferred very nearly to banrkupt myself than working.
Last but not least, I would like to spare a word about JSA, inspired by Josie above. In the not too distant past I found myself having to go through the debacle and, yes, I cannot say ever to have encountered a more patronising, intellectually degrading process ever. An international education, five spoken languages, one BA and a nearly-finished PhD at the time turned me into a very odd exception to the rule. ‘What the fuck are we gonna do with this one?’ sort of situation. Not a lot is the answer.
I would sign on every two weeks while enduring the pitiful glances of everyone present, especially my job seeking advisor, who had zero advice to give. Deep down, I don’t quite believe he ever believed my protestations that those 360 letters I sent yielded not even a phonecall. Yet, I was telling the truth then, as I do now. When I signed off, kicked off by a system that only helps you for 6 months, even though you’ve paid £ 1500 per month in tax for 8 years, I was sent on my way with a laconic ‘good luck’, no job, no help, no prospects. But I am telling you this: I felt a FREE woman, no more a supposed leech off the state’s back.
Darling Kate, you must excuse me, for it was not my intention further to aggravate you with my own personal gripes. But know this my friend: you will get through this, you will, you will, you will, and you will raise from the discarded chrysalis stronger if only a lot more cynical.
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You rant away! The system is so unfair! Just don’t give up, although I know it’s hard.
We have to face the system again in September when my son will then be old enough to claim for the lower rate mobility component, I will also ask at the same time for his care component to be reassessed as we were only given lower rate last time after being initially refused and then I wrote that letter saying I was going to appeal. With my son’s disabilities, going out to work and putting him in wrap around childcare (he’s about to start school) would be very hard on him as with his disabilities he gets very tired, also there’s the problem of finding appropriate wrap around care that would be happy to take him, yet if he doesn’t get awarded middle rate, I can’t claim carers allowance and therefore I will have to work and the level of exhaustion he will face from being in school and wrap round care from 8am – 6pm will make the disabilities he’s doing his best to work around, alot harder to deal with.
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“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. ”
This, right here. I hear you.
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Should I say “don’t give up!” or “move on, get past it, focus on getting well and leave those paper forms behind!” ?? These ideas/ courses for action seem, from what you describe, contradictory. I had the idea that they should work together. That you should focus on recovery and positive forward thinking, but this lovely form would allow you to be recognized as someone in need of help and given access to the means and tools of rehabilitation. Not so, you say? It looks like the you have to treat the successful completion of this form as a kind of “goal”, but is that healthy? conducive to recovery? It is so ….!!! Lots of love.
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You write so movingly and articulately, I wish you all the best for a rapid resolution of the DWP issues and more importantly a continuing recovery.
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So disheartening to have to continue to fight for what should be automatic. And so distressing to hear that this is, obviously, a normal state of affairs and not just the occasional mistake by the agencies.
But you must do it! Keep fighting!! I’ll be thinking about you lots!
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Lolly, ‘bolshy’ is a word that would indeed be universally understood on this side of the Atlantic.
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Sorry to learn your situation. Don’t give up, you will get what you should!
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Nothing to add except for my sympathy. I hope things go easier for you soon.
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Oh Kate…. Would that my arms were long enough to send you a trans-Atlantic hug AND a short sharp smack to the cheek to the people who are jerking you around like this!
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This is really familiar to me. The prerequisite of JSA, for example, is that you must accept you are a bad person who must be punished and infantilised for being ‘lazy’ enough not to be to get a job in an area of huge unemployment. In that case, you are also ‘unworthy’ poor as opposed to ‘worthy’ poor- for example having a disability. And even in this case I know of many horror stories involving cruel treatment of disabled people trying to get basic living expenses met.
I also have friends trying to get their disability recognised and the attitude is almost identical. I know of at least one person with chronic mental health problems, who can’t possibly cope with full time work, who will not claim DLA because they can’t cope with the form and the mental stress of dealing with the interrogation process.
One important thing to remember for those of you filling in forms is that disabled support charities I have consulted state that ‘how far can you walk’ and similar questions are actually asking for the state you are in on the worst-case day, but this isn’t at all clear in the forms. I hope this helps.
I remember being told by one place of a young woman who was housebound with chronic social problems, and when she told the examiners that she could only speak to her mother on the phone, cowering in terror whenever a stranger rang, this was interpreted to mean she was fine with all phone communications and should get a telesales job.
Many people don’t realise that the Government outsources all courses such as New Deal, and also disabled living courses, to private companies. These are paid bonuses when someone is taken from the ‘benefits’ system, and also have the power to demand benefit revokement, so often you get a revolving-door system of people being threatened by these companies into taking totally unsuitable jobs for their abilities or needs (or ‘work trials’ where people can be made to work full-time for less than £2 an hour through a legal loophole).
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Kate, you have an astonishing array of talents, skills and determination. You have seen from your blog how much your words can motivate and mobilise people around the globe to respond. Please, please channel some of your righful anger and sadness about this dreadful state of affairs into some well placed articles in national newpapers, such as the Guardian, where your voice will be more widely heard, and make a difference, both for yourself and for the great majority who for whatever reason are unable to fight for or express themselves.
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Kate, unfortunately the same tenacity that is pulling you through your recovery seems to be needed to get you the basic rights that you’ve been paying taxes to support. I know it’s not right, let alone fair. And splitting the limited amount of energy that you have to accomplish this is simply cruel. I wish you all the best.
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Oh, I am so sorry all this is happening. Stay strong. You will win eventually.
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Hugs, Kate. Somehow I thought the U.K. system would be better than the U.S.
Horror stories abound here, with tales of qualifying taking years. There are actually U.S. lawyers who specialize in this sort of thing.
On the plus side, I’m assuming all medical care and bills are covered. A basic right Americans still don’t have despite recent legislation.
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Dear Kate
I’m sorry you are having such a hellish time, made all the worse by the bloody DWP. You sound really down today, but don’t let the b******s get you down! You are so articulate – I do hope you find the strength to fight on (everyone is behind you and supporting you, even if it is from afar).
Giving up your allotment must be so difficult; perhaps you can see it just as a temporary measure?
x
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I have no words re: the state-sponsored cruelty. Sitting silently, sending you thoughts of strength and healing.
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When I saw the title of your post I thought oh please don’t do any more to that lovely girl and her other half. Am sending you lots of love and strength. Your blog is inspirational. Take care xxxx
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Oh I wish you had a balcony so you could garden in your giant teacup.
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When you start writing those bolshy letters, I respectfully suggest that you make them just a bit easier to read, for the majority of the common folk who read newspapers, than the above post. I’m not sure what bolshy means, which is exactly my point. You are a wonderful writer and I enjoy your blog, but there are times I get a bit overwhelmed with too many words that I don’t understand. It may be, in part, just the cultural divide. So take my criticism as you see fit. ; )
I wish you the best.
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:( indeed.
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i am so sickened once again by something so familiar. and the memory of my father, who had lost his means to communicate the horror of all you describe. and i thank you for using your precious energy to express all of this. for you are truly amazing.
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Kate,
Your post so beautifully describes the inequities in the systems in both your country and mine. I am so sorry, but pray that you will use your fine, intellectual abilities to continue to pursue your claim.
My journey has been easier, but I have cognitive and emotional issues related to myalgic encephalopathy (ME), which has cause lesions in my brain. Yes, I received my award on the first round. I don’t know which is better/worse: having the skills to pursue the claim or having the brain damage which automatically qualifies one for assistance.
Once you have been awarded with the claim (which i am certain you will eventually!), a new journey begins. That journey is easier because you are able to care for yourself and give in to your fatigue; but is equally challenging because you’re life so clearly is changed forever. My question was: If this all there is, what’s the point? My therapist’s response: no, Kathlene, there is always love.
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I’m terribly sorry. I agree that bureaucracy often seems to be fashioned to the whimsy and benefit of the state, rather than the citizen (or, God-forbid, merely the resident, lacking citizenship). My mother’s been in & out of the hospital in the United States for the last month with a kidney problem, and her out-patient treatment has been determined not by what is best for her & my 69-year-old father (who is also currently filling the role of caretaker & sole bread-winner), but what their health insurance will pay for. Additionally, I’ve found the system most insidious when it has previously kicked my mother out of the (psychiatric part of) the hospital, despite her being suicidal, because the health insurance would NO LONGER COVER HER STAY. The world in general could use a little more humanity. I hope dearly & very sincerely that you will not have to fight too hard to “earn” your own small corner of very-deserved humanity & understanding, and I will continue to admire your courage as you go about rightfully demanding recognition for your condition. At a minimum, too, hopefully the support you find here will help ease the strain a bit too. And be proud of curling your toes!
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I am sorry, Kate. When my father took ill a few years back and ended up disabled, it really took a lot of effort from all of us kids (now adults) and our mother, and I know I am completely altered by the experience and not all of the alterations seem good to me. A skepticism which I did not have has set in, a weariness too, but I do feel it lifting recently. Is it inadequate to say “hang in there”?
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I see the Birth of a crusader.
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We must ALL take these last two posts and the resulting comments very very seriously and do our utmost to see that these wrongs are righted and that the rights we believed we had are not lost.
It is absolutely wrong that Kate and so many others must suffer this on top of everything else.
What can WE do to see that something positive comes from this?
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Dear Kate, I am sending you the very best wishes for strength from Nova Scotia. It is so very frustrating to hear your tale knowing that this is goes on & not being able to do something concrete about it. I know it is out of the question, but if I were you, I would sooo want to just transport myself to whomever signed the refusal letter and just stay in front of them until their gave their proverbial “head a shake”. What on earth does it take? A deplorable state of affairs indeed. Semper Fi!
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Thinking good thoughts your way – I can’t even begin to imagine what you’re going through!
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I am so saddened by all of this as well.
Sending you tons of love.
Chesley
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Oh Kate, I am so sorry. As I said before, while it was difficult even for me to follow up yet again to apply for my son with my feelings of anger, rage, and futility, I absolutely understand the absolute fatigue and despair you are feeling in the midst of trying to summon up the energy to face another application…as if the pain you have suffered were not enough. Even while going through the process, all I could think about was how incredibly difficult it must be someone dealing with a disability to even read the bloody application, much less fill it out. Though reasonably intelligent, I found it was indeed a Kafkesque process.
The god-awful irony of the whole system is that what is purported to provide hope, provides only grief and more pain; it undermines your healing in untold ways. Know that my heart hurts for you and others in your position. May the strength you so clearly have shown be enough to get you through this one more time. Thinking of you.
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My mum had a hip operation last August which seems to have set in train a process of her health generally going down hill (she had post operative infections and scandalously little aftercare). A fit, active woman in her 70s, since retiring at 65 she had become one of those community stalwart volunteers and was invaluable in helping out with the grandchildren. She can now not make it down to the end of the road, is in constant pain and life is a series of medical consultations. In the face of this I find I have nothing to comfort her with. I feel the same lack of words when faced with your post. All I can say is that, as you know, there are lots of people willing you on. Best wishes, Joan.
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I’m so sorry Kate. Beaurocratic nightmare and all so very unfair. I think all I can say is, keep fighting.
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