The hidden costs of disability (and a minor rant about PIP...)
Updated: Aug 27, 2019
Your immediate assumption might be that I am about to launch into some philosophical discussion around the deep emotional 'costs' of feeling ill and drained all day every day...Well, sorry to disappoint, but I'm talking money. Cold, hard cash. That hideous thing that controls our lives (yes, yes, I know, there are far more important things than money - happiness, love, fulfillment, adventure - but ultimately, without money, these things can be incredibly hard to achieve/hold on to!), and therefore can control our emotions, relationships and just about everything else.
So how come these pieces of paper, that take so much effort to earn, are so easy to give away? Some days I genuinely don't know where it goes! And some days I do...particularly those days near the end of the month...you know the ones, when you literally count the 10ps in your change jar in order to afford a pint of milk!
But anyway, I digress, my aim was to compile a list of all the hidden expenses that no one really warns you about when you sign up to be disabled - pretty crap club really, but I guess I signed some contract with the devil or something.
Let me start with the big ones (and no, I don't use all of these myself, but I want to represent the masses of people who do):
-Basic wheelchair = from £80
-Electric wheelchair = from £600
-Bath/shower grab bar(s) = approx. £20 (+ cost of hiring someone to fit it properly, if you're not that way inclined)
-Bath seat = £60 - £150, depending on quality/function
-Raised toilet seat = £30
-Perching stool = approx. £30
-Walking stick = £10 - £30
-Foam grip cutlery = approx. £20
-Dressing stick/shoe horn = approx. £5
And this doesn't even touch the really big things, like ramps and stair lifts and the cost of rebuilding your house/moving if your property is no longer suitable for your needs!
But there are smaller things too. The little, regular costs that sneak up on you and steal your pennies when you're not paying attention. Such as:
-Prescriptions - I pay £10 a month (my club fees??), which is nothing compared to how much they would cost if I paid per med, so I can't complain at all, but money is money.
-Non-prescription meds - paracetamol 40p, Senna £4, Imodium £4, Heat Pads £5, Nytol £5 etc. etc.
-The dentist! Ok, so everyone has to deal with this, but having Arthritis in your jaw increases issues with grinding and gritting teeth, meaning you often need specialised mouth guards and more tooth extractions/crowns/fillings. Plus the intense drugs you are often put on can cause gum problems as well as constant ulcers, discoloration and bleeding - fun fun!
-Food - Again, I am aware that everyone needs food, however, particularly with bowl/gastro issues, you are forced to try a variety of weird and wonderful food trials, often coming with hefty price tags. Plus when you've had a really crap day, you've gotta treat yourself to junk food, it's the law!
-Coffee!! I am pretty sure I single-handedly keep the Hampshire Costa staff employed... I use to say "Oh, well, if I have to spend an hour at the hospital then I better treat myself!" But as my disease got worse, and hospital visits increased, I realised I was spending a blooming fortune on these 'treats'! So I was responsible and bought a travel mug so I could bring a drink from home...the only trouble is, my Fibro-foggy brain always forgets to fill the damn thing!! Haha! So back to Costa I go...another £4 escaping from my bank account.
'But how can you possibly afford these things??' I hear you shout. Well, for us lucky ones who can still work, it isn't quite so bad (although cutting down to a part time salary is a bugger), but for those in the club who can't, it is a different story. They are forced to either go without or beg, borrow and steal the money. And then our glorious GOV steps in. All praise the marvelous DWP and their all-knowing wisdom! Here comes the PIP Man to save the day!! ...too far? Soz.
Ah, PIP, how I hate thee...yet how I desperately want and need thee...
Personal Independent Payment (previously DLA) was designed to help support disabled people live full and accessible lives, from buying the items listed above to running a car, and therefore remaining independent for as long as possible. Sadly, so many inconsiderate people decided to cheat the system that now it is nearly impossible for genuinely disabled people to receive any help. As someone who has already had one claim denied and is now awaiting a second face-to-face consultation, I am fully aware of the stress this entire process causes. Particularly when the consultation report includes blatant lies (such as reporting that a person with Swan Neck has 'Good trip...Yeah...ok...) And even your doctor's comments are ignored.
But all we can do is keep pushing for what we need, keep showing our truth and keep hoping that one day someone will actually listen!
Keep smiling folks!