Archive for November 2011
There are two versions of me at the moment. When I get a chance, there is normal, competent, capable me. I am enthusiastic, working my way through lots of volunteering work at an art gallery, as chair of a residents’ association and of a disabled people’s mobility forum, and other things besides. I sit at my desk typing away, chugging through a solid to-do list, interacting with friends online, getting excited about what’s to come.
But one or two days a week, there is another version of me. Listless, exhausted and depressed, lying in bed, dizzy if I dare to sit up and weak if I stand. On days like that I fall asleep when I try to focus, and spend much of the time dozing. I am too tired to eat, and it would be dangerous to attempt a shower.
I’ve been that second, soulless, person rather too much lately, as a result of my pain, and the side effects from strong medication. When it happens, it’s impossible to hold onto memories of being capable. It may only be a day since I went to the shops or drove to a doctor’s appointment, but it feels as though I cannot do anything – and never will. I need someone to bring me food and to care for me. I forget how much I can achieve on a good day, because when I’m that ill and exhausted I become depressed. It seems as though my health is going backwards and slipping from my fingers, and that I will never be out of bed or independent again. My life is no longer my own, as I am unable to control it. I end up crying, begging my husband to come home and look after me, and worrying that I am a poor excuse for a wife – meaning that after a hard day’s work my husband still has to walk the dog, do the shopping, and get himself a meal. Little happens in our household unless he does it, and that’s just not fair!
I am writing this to remind myself that good days do still happen. That I have so many achievements recently; singing Handel’s Messiah with my choir, organising an arts display space, running the Pylon Appreciation Society, and even just little things such as getting a few bits from the supermarket. I need to find a way to hold on to these memories on a day when they would be impossible.
On my bad days I moan on social networks such as Twitter, and I am lucky enough to have friends who are hugely supportive, rather than being scared off.
But it’s all very well being introspective. I need to learn new coping techniques. I need to hear how other people get through their worst days. So it’s over to you. How do you manage when you’re having a flare up or relapse, or when everything gets on top of you? How can I stop the feeling that I am losing control of my life?
This blog is crossposted to Where’s the Benefit? where I am one of the team.
In the early hours of this morning, this is the appalling story with which the Daily Mail were leading. “Disabled benefit? Just fill in a form”.
They report that “Almost 200,000 people were granted a disability benefit last year without ever having a face-to-face assessment. A staggering 94 per cent of new claimants for Disability Living Allowance started receiving their payments after only filling out paperwork.”
The Mail goes on to explain that – shock horror – disabled people had completed DLA forms, and many of them had also provided evidence from their doctor. Yet because they had not had a physical assessment, there is apparently something wrong with this process. Another reason to erode disabled people and suggest that we are a drain on society. You can feel the implication that we are living on handouts because it’s easy, rather than because it’s essential.
How dare the Mail suggest that we “just” fill out a form! That form and notes comprise 55 pages – 38 of which have to be completed by the claimant. This involves a lot of writing, and having to be able to think straight and focus over a long period of time. It can require a huge effort, particularly if you have disabilities which affect communication, or your physical ability to write or type. Also, as the form focuses on activities which you can no longer manage, or need help to achieve, it is a depressing process – making you realise how disabled you really are. It can be soul destroying.
Perhaps the Mail ought to look at that form in more detail. That tiresome, frustrating, difficult form! Big, isn’t it? Detailed, isn’t it? Daunting, isn’t it?
As well as the form itself, there is the need for supporting evidence. It helps if you include letters from specialist doctors, and for my own application I also provided a diary of a week in my life, and statements from people who knew and lived with me, describing the help they have to give. I know my GP was also approached by the Department of Work and Pensions to confirm the information I provided. I had to not only explain the sort of help I needed, but provide independent evidence.
Fellow claimant Mary told me: “I have usually had to go for an interview but once got a 2 year award on “just” the DLA form. That form included sections to be filled out by all sorts of people involved in my care and treatment – GP, specialist consultant, main carer and so on – plus the instructions on the form required me to submit with it a copy of my (then) current repeat prescription and formal social services care plan. Perhaps that can be described as “just a form” but it’s hardly as if I got my DLA based purely on my own testimony.”
The form and supporting information provided will be detailed, and sometimes the decision makers will have a straightforward task – for example if someone is both deaf and blind. Often the information provided will be enough for the Department of Work and Pensions to make an award straight away. So yes, many people do get awarded DLA on the basis of “just” paperwork. But if somebody has significant impairments, sufficient to tick the boxes for the decision makers, and this is documented by their GP or other medical professionals, surely it would be a waste of time and money to haul them in for interview?
Form filling is exhausting, depressing, frustrating, and repetitive, but we force ourselves to jump through these hoops because we need the support. The money to cover taxi fares for someone who is unable to carry their shopping home on the bus. The money to pay for incontinence pads and other medical supplies. The money to buy a few hours’ time from a cleaner or assistant. We are certainly not doing it for an easy life!
And then there are the cases where people don’t get the award they are entitled to based solely on the paper application, and have to attend in person for a tribunal. In fact, most of the people of whom I know have applied for DLA actually had to appeal before they received the award they deserved. Take Robin – he has regular reviews of his DLA, and after having been found eligible for support twice based on the same information, he was then turned down in June this year. He is waiting to go to tribunal in December, and told me: “The DLA decision maker considered my regular loss of speech production or speech comprehension, and my struggle to safely cross roads because I can’t accurately judge distance or speed both non-issues. Well to me they are significant issues, and I regularly have significant difficulties because of communication problems, and I’ve nearly been run over more times than I can count.” Without the money provided by DLA, he is struggling to cover the additional costs caused by disability.
If you need more evidence of why DLA is so critical to the lives of disabled people, just read “the real difference made by DLA” or head over to twitter and see entries with the hashtag #myDLA to learn why this benefit is life changing.
Surely these stories make the point that, where possible, making a decision on a DLA award based “just” on paperwork is a perfectly reasonable thing to do. And where more evidence is needed, or the claimant appeals the decision, a face-to-face interview will be held.
Well, Daily Mail? What’s so unreasonable about that?
It is hard enough to get a DLA award as it is. Please, don’t say we’ve got it easy.