Helping Hands...
As anyone who follows me on twitter already knows, I'm mired in the hell of re-applying for my Disability Living Allowance. On the upside this means I'm not remotely bothered about moving flats so soon, that's easy compared to benefits applications, although I'm not sure I'd recommend it as a way of dealing with moving related stress. Oh, and if you have to move on the cheap using only 'friend labour'....don't do it in August when everyone's on holiday!I'm off to visit my GP this morning, his name will be on my DLA application so he needs to know what kind of issues I deal with on a daily basis. How often I fall, what help I might need going to the loo, preparing a meal or during the night are not subjects which crop up during routine GP consultations as they aren't strictly speaking medical issues, but they are the issues the DWP are interested in so TopDogGP and I have to have a chat. Despite the best efforts of lovely physiotherapist J, my ribs and spine are as directionless as any politician so it's also probably not a bad idea to be seen by a doctor, I tend to have a poor perspective on how well I am at the best of times, which abandons me altogether at times like this. I do know I haven't been so ridiculously lax for quite some time.
It's difficult to get an understanding of what kind of questions and answers are required by the DWP for a DLA application so as I'm currently filling mine out I thought I'd publish part of one of my answers. It's an issue I didn't give much thought to on the occasions it occurred, other than a few minutes sulking about 'dirty, opportunistic, groping bastards' but for some reason having to write it down has been very distressing. The question asks;
Q.31 Do you need someone with you to guide or supervise you when walking outdoors in unfamiliar places?
"Sometimes I have no choice but to ask complete strangers to help me. Mostly people are very kind and will go out of their way to help, but some take advantage and I have been sexually assaulted by strangers 'helping' me who have groped my bottom or breasts. It is difficult enough to fall and stumble in public and deal with the pain of multiple dislocated joints, which dislocate again while I'm being helped up, but being frightened that the person assisting me might use it as an excuse to sexually assault me makes it even worse.
I need someone I know and trust to be with me whenever I am outdoors so that they can help me when my joints dislocate, get me to safety and I wouldn't have to be worried that a stranger might harm me further"
22 comments:
Oh fuck. Do you know, it never occured to me that people WOULD do this, but I think once again you've put a finger on an unspoken fear of mine. I am absolutely terrified of fainting or falling in public when I'm alone, and I always feel like it's not logical, because what's going to happen, right? And this. THIS is what I'm scared of happening.
I think my DLA is up for review in January. Dreading it already, but hoping that I have a diagnosis by then.
I am thinking very good DLA vibes in your direction. Those bloody forms. No wonder there's so much unclaimed benefit. There were definitely times when I thought 'This isn't worth it.'
Do you think you could, for the benefit of those who've never had to fill out the forms, post a few of the more humiliating/bizarre questions on the form, with a reminder of how specific you have to be? Might open some eyes.
Ugh, this has happened to me many times, the groping, opportunistic bastards. It's why, if I fall, even if hubby is with me, I yell at people to "stay the fuck BACK and don't help me up!". Not only have I been groped more than once, but their clumsy way of "help" often subluxes my shoulders, and that REALLY hurts. With the groping incidents, the trouble is that by the time you're aware of it happening, the buggers are already gone, and there's no way to prove what they've done.
I'm terrified of falling in public. Since I'm deatfat luckily people don't offer to help me up. The few times someone has tried to help me I have been uncomfortable with the process at times but thought I was being unreasonable. Now I know that I might not be.
I get hurt in even a simple fall from standing to the ground and can get hurt being helped up. When I express the pain people can react with disbelief and then think I don't need help at all. I'm already embarrassed and just don't want the rudeness on top of it.
Now, I don't go anywhere without my husband. I don't like the loss of independence but I haven't been able to juggle using a support cane and a long blind person cane at the same time. Whenever my long cane finds an obstacle for me I sublux my wrist.
Plus, I have no sense of direction. I get lost at the drop of a hat. I've had years of training and it just hasn't helped I don't know if it is related to proprioception.
I'm sorry you've had these experiences. Thank you for sharing them. I feel less inadequate and messed up now.
Frak. I know there are people out there who are like that, but it's an intellectual kind of knowledge, you know? To actually confront the fact that someone I know (indirectly, by way of my wife) has been molested by those lowlife scum makes me wish for the ability to drop asteroids on them in reality.
Bendy-I hope you carry some sort of protection with you, say pepper spray or something else in order to nail those a-holes who take advantage of you like that. One thing is for sure: If that answer doesn't get their attention, nothing will.
or you could just say 'Yes I do.' Whilst I'd also like to see the look on the face of whoever it is assessing your form, I wonder if you might be falling into the trap of thinking you need to justify everything to the nth degree because you still think people don't believe you and you are 'just mental'. I think these things are all about the numbers, no gets you a zero, yes gets you the points, anything that looks grey is just giving them a way to not really understand you. Some explanation might be a good thing but keep it on focus or you'll never get through this thing with your mental health intact.
The formula for answering the questions is to think how you are on your worst day and that's what you write.
Simples. Yes, I know it's not actually that simple but if you're getting yourself in a state then you're forgetting the irony of your cyber-name. Point is you are anything but benefit scrounging scum, you're a young, intelligent, creative woman who should be living life to the full but can't whilst the ridiculous benefits system coupled with the postcode lottery effect means that you are disabled because you don't get the support you need to deal with the effects of the EDS. Makes me cross it does.
So sorry. Just a minor thought, but going back to the soulless criteria used to assess for DLA, it might be good to put 'every day I have no choice but...' rather than 'sometimes'.
Also met a bendy recently who got Citizen's Advice to go through his form and advise him what to put where, so that he got full DLA. Worth a try possibly, especially if your CAB can do phone support?
Arienette: I'm planning to do exactly that with the forms. I hope fear of this kind of thing doesn't stop you going out alone, most people are really kind and will go out of their way to help appropriately.
Stephanie: I'm sorry you've experienced this too, but thank you for sharing it
WackyLisa: I would think it's very linked to your proprioception. Although, weirdly at times when mine is most off I find I have to have my eyes closed to be able to move. The combination must be incredibly tough to deal with, hugs
Bill: It sounds dreadful when it's written down. The thing is, it wasn't especially nice, and I'd like to slap the men who've done it, but the consideration most people show balances this kind of crap out. Sorta ;)
MrN: The problem is that if I'm in the position to need that kind of help, then I'm so overwhelmed with pain that I can't really say or do anything much. By the time I can, it's too late. They'll get what's coming to them though - karma's handy like that!
Bluehook: Thank you so much for that, I think you've rather hit the nail on the head! I am finding it really difficult to know what to include and what's too much detail-mainly cos of the mental thing, I still don't really believe it all deep down I s'pose. I KNOW it, but I don't feel it.
I definitely need to include the reasons I need the help, but knowing what to say about EDS is so tough! Thanks again Xx
MissPiggy: Thanks! CAB locally are pretty useless and also so overwhelmed atm that phone calls don't get through. I could very easily do someone else's DLA application as I know how to structure the answers etc, it's just when it's your own it's different ;)
I hate the f'ing forms and was awarded 'indefinite' until the powers that be decided that sometime soon I will have my whole life questioned again it seems. I wonder how much it will cost to put that stupid idea into motion. I don't really care because I am no fraud and if I have to go through it all again so be it but it takes its toll it really does. You see the kind decision maker finally understood after explaining again after three yearly intervals that I can't even swallow without bloody choking. I think they would prefer nowadays to be honest that I did just do so. Imagine the headlines - yippee dla scrounger choked to death kerching... money well saved there then. Am I bitter yes.
I not only answered these questions but I put see attached sheet for additional info. Explaining in great detail that I can't open doors on my own in shops when out and a door for example just pushing back on me leaves me on the floor unable to get up unaided. i can't use aides because of my stupid hands, shoulders, elbows bla bla so a person who knows that I can't just also be pulled up by the wrists thus dislocating them is essential. It sounds so stupid but it is actually true. In essence I know they have to know the ins and the outs but my god is it not depressing to write it down the whole f'ing deal of living with ehlers danlos.
I know its pedantic but you need to be more specific in your answers or should I say more pedantic! So when you say 'I need to be helped up' Explain that you need to be helped up by a person who understand that you cannot just be yanked by your wrists etc. as this would cause more dislocations & why, repetition ... each time because I have an incurable inheritable disease of the connective tissue which affects.... known as ehlers danlos. Each and every time. Qualifying every statement with facts. You have to spell it out.
I had to have extra time to fill out my forms because I simply found it all so stressful explaining it all and painful physically.
Some of the questions i had to explain that it was no good asking me how far I can walk bla bla because I am in mind blowing frigging agony before even thinking about taking a bloody step. Although I wouldn't recommend the swearing.
I also think its important to stress that the condition does not improve with age as the wear and tear on joints takes its toll and leaves the sufferor MORE prone to multiple problems, and it is depressing etc. to have to keep filling in forms when the condition is INCURABLE and lifelong. Some of the nightime issues I have I didn't even realise were so bad until I thought about it carefully and realised most people probably don't have the crap going on that I do. So that was cheery too. I know each persons condition can vary but dear god if we queried MP's expenses with such scrutiny there would be riots in the streets.
Ok off my soapbox. Rant over. Can you tell the very term DLA Renewal connected with our condition gets me somewhat addled.
I know just how having to look at the reality of living with this shitty thing is by having to fill in the forms describing what most of the time we know but try not to dwell on pychologically too much as it is not easy reading.
I know I know there are probably people out there saying I am being over emotional and they are only doing their job but surely surely, can they not see this is not something that goes away or with a bit of tlc miraculously disappears. Its not a case of a bit of lower back pain for gods sake.
There's me thinking my rant was over....
Good luck BG
Massive gentle hug winging your way.
xoxoxoxo
The problem in dealing with gummint is this- they spend money (on new offices, jollies, etc)without regard to the fact that it's the taxpayers cash they're spending. When it comes to giving money to legitimate claimants then you'd think it was their own.
The prime purpose of the DHS and other benefits agencies seems to be to prevent to money being given out. The more they hold back, they more efficient they are judged to be and the more there is in the bonus pot.
I'he had to fill in the dreaded forms for my current benefit. I'm off sick and my SSP has run out. No doubt I'll be hauled before a "doctor" who doesn't know me or my medical history and whose main concern is to prevent me from getting any benefit, because the more they "save", the more there is in the bonus pot for them.
I go to pieces when confronted by forms. I'm reduced to a gibbering wreck when confronted to pages of questions along the lines of "when did you last stop beating your wife?".
I rang the helpline and got her to fill the form in for me. She asked me the questions and I answered them (at length) and she wrote down the answer most likely to find favour. A couple of days later a draft of my questionnaire arrived in the post. I read it through, signed it and posted it off.
Bingo. Benefits paid and at the higher rate.
Now all I need is to persuade my GP to accompany me when I have to go for my medical assessment.
I've surfed in and out here, and I have to say I'm fucking appalled - people take the opportunity to grope someone who is asking for help?! What?! *sigh*
I just went through the DLA myself and was turned down because someone didn't read the paperwork I included re: my citizenship, so I've had to resubmit the damn thing all over again. I also had to do the same for my son and I filled it out in MAJOR detail. A friend of mine has said "If you don't feel completely depressed and needing a good cry after filling out your DLA you probably haven't filled it in properly." It's painful but it's true.
oh Bendy. Gentle hugs for you. I've got my DLA tribunal in a week, so no doubt I'll have to justify my very existence all over again, this time whilst being questioned like a criminal by 3 "independant arbiters". I've managed to find representation from my local advice service (not CAB, as they were too busy to even answer their phone). I wish you much luck in your renewal and hope you get higher rates in mobility and care this time.
Nemonie
This absolutely infuriates me Bendy!
I can't believe the amount of benefit scroungers there are out there and yet you and others like you have to jump through hoops just to get what you so need never mind deserve.
I am also appalled to find out that others who offer to help do so for their own ends.
I have everything crossed for you, plus as an earlier poster stated about your intelligence and creativity they forgot to say how beautiful you also are, both inside and out!!XX
Y'know, I keep coming across these horror stories, and the awful distress.
I'm begging to wonder whether it's a post code lottery.
I've had multiple strokes, and in major ways I LOOK quite normal, other than I dribble a lot, and walk aided, when I have the opportunity to have someone to accompany me. I don't feel hunger, I don't feel pain, but my intellect is largely intact.
I CAN walk, but for short distances.
I'm married with kids.
But, and here's the interesting bit. Because my Dr's are between me and the hospital, I asked to have my care transferred to my GP practice, instead of the hospital.
I've only ever been asked to attend an interview once. I was in there 5 mins. Downside? I was reduced from higher rate care to middle. Upside? They put me on indefinite.
I'm of the opinion, despite what .gov.uk says, that it's not a medical. It's an assessment of needs. That is the criteria for DLA.
What bothers me is that (I'm in northern England) is that talking to other stroke survivors in the south, they get hammered with these stupid interviews.
I don't.
Ruf is open mouthed with shock that someone would do something like that.
My current experience of the Benefits system with my teenager drives me to despair and she has a huge financial safety net.
For those who really need these funds, having to jump through hoops to prove you are disabled, it rather reminds me of the methods of the ancient justice system. Things like having to plunge your hand into boiling water. If it healed well, you were telling the truth, if it went manky, you were lying... There just seems to be no civilised logic in the benefits system.
If the DWP accept the answer Ms. Bendy Girl has given:
Then she has pretty much nailed a watertight arguement for the lower-rate mobility regardless of anything else. Though one would hope the DWP get blessed with a tempoary nugget of common-sense and award the higher-rate mobility upon the renewal as she clearly qualifies for it.
Mr Nighttime: Unfortunately Ms. Bendy Girl lives in a increasingly facist state that does not take kindly to the physically vulnerable possesing anything that might aid them in a potential attack situation.
"Noxious" spray's are classed as "section 5 prohibited" alongside flamethrowers, heavy machine guns and anti-tank missile launchers under the UK Firearms Act/s. No kidding, the offence and punishment sentence is the same. If that's not an indication of a bizzare and backwards state then; I don't know what is...
It is horrible to experience and even worse be forced to explain yourself about these things. I try not to let people know I am ill (or at least how badly) because it lets them know I am vulnerable. However now I'm worried that I'll be seen as a "faker" if I don't let my guard down.
The things people will do or try to do during autonomic episodes are vile. Works the same way as attitudes towards drunk girls as it often looks like I've been drinking and there are still evil gits out there who equate not being able to say no as saying yes.
It is ridiculous that we need to spell out the dangers faced by anyone alone and wobbly. Ridiculous and degrading. I hope you feel less shaken very soon.
The problem with rape sprays and alarms is that you have to have the chance to dig in your bag or pocket to get the thing out, then attempt to use them. This is difficult enough if you are being abused, but if you have fallen and you are trying to get back up without causing any more damage, I can't imagine that you can also grab a spray and discharge it in some pervert's face. A better idea would probably be to loudly announce 'PLEASE DO NOT TOUCH MY BREASTS/BOTTOM' in front of everyone, thus exposing and embarrassing the gropey tosser.
We have a similar situation with our son. Despite being 12, he has non-existent hazard/risk assessment skills and is extremely trusting of adults.
He needs someone with him to prevent him from doing dangerous things (eg walking across the road without stopping to assess the dangers) and to protect him from perverts or bullies. Other children and a surprising number of adults think it's funny to push him around or trick him into doing dangerous things.
Persuading the DWP that he has a legitimate need to have a trusted person with him was a nightmare: the view of the idiots we dealt with was basically 'he's a big lad now, he should be able to look after himself'. Morons.
How appalling that someone would assault you in such a disgusting way! I am so sorry to read this happens to you.
There is a similar question on the work capability form in the mental and cognitive functions sections...
Can you leave home on usually
your own and go to
places you don’t know?
The tick boxes are - yes, not very often & it varies.
Why is there not a simple 'NO'?
Okay, different form and I have a mental condition, but it's note worthy. It completely discriminates against people with agoraphobia and anyone else who can't get out on their own. I wrote that "I cannot go to any unfamiliar places without my 'safe person' with me". They still rejected my claim.
Don't let them think for a second that you ever go out unsupervised if that's the case. ALWAYS!
Best of luck with the rest of that miserable soul destroying application. x
PS. bluehook, what do you mean that someone is 'just mental'? You're right, that's what they think! I have explained my answer to the first ESA question in my last blog post - why being 'just mental' deserves sickness benefit too. Only wish they thought so!
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