Page 18 Other Information. IB50 Form
Updated: In the interests of clarity, with one or two edits to remove swear words etc, this was the actual answer I provided on Page 18, other information of my IB50 form. The form had to be returned today, so I will have no idea throughout all of the Christmas and New Year period whether or not this review will mean my claim will be denied.
I would give anything really I would, for things to be different. You see, if things were different I wouldn't have to fill out this form telling you in minute and trivial detail how I walk, how I lift, how I sit, how I stand, how I think, how I feel, and even how I piss and shit, or, more precisely how I don’t. As, after all, that's all you're really interested in.
In the past few years I’ve learnt to live with my condition, an inherited genetic disorder that for reasons I’ll never know, whilst I was still just a child was said to be ‘seeking attention’ and turned usually clear sighted doctors blind. I’ve had to, there’s been no alternative. No choice. No cure for Ehlers Danlos Syndrome (EDS), not even a treatment in sight. Just stronger and stronger pain relief, that in an ironic twist of fate doesn’t work as well as it should, and if you happen to be lucky enough to live in an area that provides it, expert physio.
Despite all that, despite the mislabelling, the trauma, their insanity and very nearly mine, somehow I’ve found a way.
I accept it now. It’s just a part of who I am. Like the brown eyes and curly hair, or being 4’8, my need to be nice to everyone, to always put myself down, or my irrational fear of spiders. It’s just another part of all the many things that go to make up me.
Except now, forced once again into filling out these forms, it’s not just one part, it’s an all consuming everything. Nothing secret, nothing sacred. Every minute detail of my life must be revealed, recorded, repeated, repeated, and repeated. And then some more, endlessly made to fit into these boxes. Humiliation at a level never quite complete. All that effort, all those things that go to make up me, a person, a life, they are not relevant here. So, really, I would give anything for things to be different.
I would give anything not to have to fill out this or any other benefit form, give anything not to have to tell you, a faceless, nameless stranger details of my life so intimate that day to day I try not to think of them myself. How from one day to the next I never know the level of disability that will greet me. Will I fall as soon as I try to get up, or will it be a little later? Will it be in public or private? If I dislocate both hip and SI joint all in one go will I lose control of my bladder, or worse my bowels? Will I have to rely on a complete stranger for assistance? If that stranger is a man, will he, like so many, take advantage of the situation to grope my tits or arse? Will he like so many think I don't realise? Worse still, will he think it doesn't matter because I'm 'just' a cripple? I never know. But now you do. In triplicate.
So really, I would give anything for things to be different. To be able to earn my own living, not to have to ask, not to have to beg. Not to be forced to tell you everything yet again.
16 comments:
the forms are because they don't think you know the best way to get up, walk, liftand so on.
as if your not that disabled ,you just never figured out the best way to go to the toilet or open a packet of crisps.
you may get a letter back suggesting that you lift with your knees!
Good post, and i felt every word.
oh sweetheart, I feel for you... Truly I know what you are going through... well in relation to the beauructatic bullshit.. anyways..
cheers kim xxxxxx ( extra kisses for xmas..)
I really, really know what you mean.
I think this is my first visit to your blog. You reminded me to be thankful for my great genes. I'm 64 now and still going strong.
I know what you mean by forms. The 85 year old lady next door has to go through that every six months, hell, nothing in her life is going to change, other than they keep knocking her food stamps down to ten bucks a month.
What doesn't kill you makes you stronger, or so they say. Hang in there hon, hugs.
Spleenal That's worryingly accurate! Do you work for the DWP?! Grovelling apologies at the insult if not ;) In all seriousness on things like DLA forms if you don't justify why it would be unreasonable for you to have a commode in your bedroom they'll try and insist you should as a way of refusing higher rate care, paid for care needs that occur at night.
Thank you Casdok, I'm sure you have far too much experience at filling in these forms.
Kim, thank you. It's ridiculous isn't it! xxxxxx
Mary, I know ;) x
BBC Hi and welcome. Ridiculous isn't it!
Well done! Bendygirl - that was a really insightful post. Like Casdok, I felt every word.
I think most people with long term illness/disability would identify with your feelings of resentment here. I know I do.
Just keep telling yourself that you're better than anyone in that bloody 'benefits office'. As 'BBC' so rightly stated above 'what doesn't kill you, makes you stronger' And you sure are strong, Bendygirl!
I'll try to make time to write in more detail soon.
Regards,
Steph
Thank you Steph. I hope you're ok atm and your hand is healing up well?
I don't blame any of the ppl who work in the benefits offices, the vast majority of whom are decent, helpful and appallingly paid and treated. I do blame the government (and all the other political parties) though for their sheer ignorance and arrogance about the realities of the welfare system. Hugs BG x
If its any consolation, the 'faceless nameless stranger' who will receive your form doesn't give a toss about 90% of what is in it - they are looking for those specific indicators that you meet the disability criteria. If they find them, great, you get the benefit, if you don't you get rejected but can apply for a reconsideration. The form itself is a compromise - the faceless nameless strangers who read them would prefer something a lot shorter and to the point, but in the past they and their faceless nameless superiors have found that a lot of people who deserve the benefit missed out because they weren't clear about what it is they had, how it actually affected them, or what the implications were. So after several of the faceless and nameless from the DLA talked it over with the (presumably named and faced) benefit recipients and their representatives at various charities and help organizations, they expanded the forms to include more details and more options in order to catch those people who for whatever reason were failing to properly communicate their disability to the ranks of the faceless and nameless who ultimately have to make a decision.
As an aside, you may want to consider joining the ranks of the faceless and nameless... not the best time to do it, I admit, what with current hiring restrictions, as impersonal and evil beaurocracies go, the DLA allows flexible part-time working, is much prompter than the private sector at accomodating disabilities, and to be bloody honest, you might appreciate a different perspective on the day-to-day workings of the faceless and nameless drudges that keep the wheels of the welfare state turning.
Hello Faceless drudge, welcome to the blog and thanks so much for your comment.
Just to be clear, as I've only mentioned his elsewhere, I have no problem with those working for the DWP, administering the benefits system etc the vast majority of whom in my expereince have been extremely helpful pleasant people, and the few I've known have been very poorly paid for what they do. What I'm criticising/ridiculing/attempting to expose through this blog are the problems inherent to the system, particularly from the persepective of someone with a fluctuating disability.
Thanks for the suggestion of applying to work for the DWP, it is something I've considered, but my biggest barrier into work is not being able to make it into a workplace on a regular basis, making life somewhat tricky! I live in hope that will improve.
I do hope you'll be back to the blog though, Bendy Girl
Faceless makes a good point here BG! Perhaps you should add to your next form, that if the DWP would be happy to employ you, bearing in mind your needs (including regular days off "sick", adjustments to building, parking, etc), then you would, of course, be happy to consider it!
Would be good to see "them" putting there money where there mouth is!
We really aren't that bad... I don't know all of the buildings, but ours has wheelchair access, disabled washrooms, and large elevators... I don't know about the parking but they provide a shuttle bus from the train station that would accomodate a wheelchair. I'm not disabled, but last year after a serious fall messed up my leg I got a short taste of what it is like, and found the extra hassle of getting in to work pretty minimal - certainly a lot easier than getting in and out of my own building!
As for hours, I work 4 days a week and I know people who work less... there is flexibility in working hours, though I suppose it would depend a bit on what job you sign on for.
I don't mean for this to sound like an advertisement for the DWP, but we aren't a bunch of evil hypocrits bent on kicking the disabled into the workforce while laughing from our wheelchair - inaccessable towers.
I have only found your blog today and have just read a few posts. Your description of the walk to the shop to buy chocolate had me in tears and grateful for the (limited) mobility that I have. I am 30 and need a hip replacement (for reasons unknown) and have days when I do (to my shame) feel sorry for myself and what I cannot do, but I do try to remember that I am lucky, that things could be worse.
I will be adding you to my favourites.
Fiona
CG: I might just try that!
Faceless: I don't think the DWP are that bad, and as its the public sector there is usually a pretty good attempt to be 'positive about disabled people'. I think my latest post will have helped to explain why for many of us it's just not that easy though. I think the biggest thing that would make a difference to employment is changing practices to encourage things like working from home, for people in my kind of situation it's the only realistic long term option.
I don't think the DWP are hypocritical..not really ;) just the politicians deciding on the policy.
Fiona: hello and welcome. Please, don't be shamed by those sorry for yourself days..I'm a miserable cow really, I just hide it well ;) In all seriousness, at our kind of age its a bit crap to be so limited, and if you didn't feel sad, or resentful every so often, well, I don't think it'd be normal! Thanks for the favourites thing, say hello again! BG x
How I wish I had the same wit and ability as you have to write the same when it comes to forms. Why is it that we have to keep running so much harder just to stand still? That actually doesn't make sense, but I hope you get what I mean.
Hi from one benifit scrounger to another! Im not quite as bendy as you well I dont think so I dont like to push it too much cause of the pain afterwards :o
Great blog and I can totally relate! I just recently had my first experience of filling in a DLA form well my daughter did I couldnt actually write and yes talk about complete loss of dignity!?
Ive had a child and done care work for quite a few years but never thought Id be in this position myself and its rather horrible. I mean Im not quite at the stage where I cant wipe my own backside but somedays its soo bloody painful I almost cant but I dont want to exactly write that on a form! Its bad enough I feel like a waste of space and cant even do washing or even some days button my own trousers Im only 32!!! 32!?
Dont get me wrong while my application was being dealt with the woman on the phone from DLA who called was very nice and helpful and Id say they dealt with my claim rather quick albeit the lower rate which to be quite frank isnt much but I feel bad even taking it when Id much rather be working! I cant go back to do care work now or possibly ever at all in fact I dont know when or if Ill get back to work anywhere! At least I can do web design from home but even thats limited!
But yeah the form needs to be changed I mean theres just got to be a better way of asking these questions which are really quite embarrasing for the person it concerns.
Keep up the great blogging!
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