It had to happen eventually… I’ve been dreading it since it was announced, and a hefty envelope finally crashed down on our doormat, throwing up dust, desperation and a smidge of depression. I’d been unhappily sitting in the queue with all my other disabled ‘colleagues’ in the UK, waiting to receive the ‘document of doom‘ (said in a deep, echo-y voice). And now it’s my turn to fill in a scary monster of a ‘Personal Independence Payment’ booklet to justify my disability to the ever-so-caring powers and bean-counters that be.
Once upon a time I was awarded a modest ‘Disability Living Allowance’ (DLA) to help us with the cost of living with disability. Gadgets such as a travel scooter to stay relatively mobile. Odd-sized shoes to fit my different orthotic foot support thingies, (Size 14 on my left foot. That’s big.You know what they say…). Ready meals because I can’t safely prepare anything more than a sandwich. Endless trips to hospitals and treatments. Drugs and vitamins not on prescription. Higher insurance. And and and, etc etc etc… This ‘DLA’ was supposed to be for life. Like too many other conditions, Multiple Sclerosis has no cure after all, and is generally progressive, so why shouldn’t it be permanent?
The four-weekly payment was never enough to cover the extra outgoings needed for our family in dealing with my condition, but it was (is) extremely welcome. And whilst I’m still in a job, it has allowed us to put extra cash into my pension, knowing that one day soon, MS will summarily decide I can’t work. And that in retirement, I’m likely to require increasing support, care, maybe even hospice time… I’m lucky, so lucky to still have a job and have understanding employers and bosses at Dixons Carphone. Many don’t have that ‘luxury’, and DLA is their only lifeline.
My DLA (awarded for life remember) is now being withdrawn. I have to apply for it’s replacement. PIP. PIP has been dressed up as a way to recalibrate the system and to ensure those who really need support get it. But guess what? It also arbitrarily redraws the boundaries and measures used. It saves the Treasury a teenie wedge of cash, but of course shows what a jolly good, determined job is being done in reducing the Welfare budget. And plays nicely to the audience and certain media convinced that we’re all scroungers, a waste of space, an awkward, embarrassing blot on the landscape.
As the process goes on and more of us receive that lovely envelope, less people are receiving PIP payments. Most of them thoroughly deserving of, and desperate for, support. And a life. Many of those that have been stripped of their ‘permanent’ DLA payments are now marooned at home without any means of transport. Cutting back on heating. Or food. They’re isolated, depressed, suicidal… Decisions appear to be random, or based on a tightened noose of tickboxes that need you to be really, really disabled instead of just really disabled.
Enough whining. Now I need to work my way through the questionnaire, laying myself bare with my MS Symptoms. To a pen-pusher with no medical training. Can you dress yourself? Can you wash yourself? Which bits? How far can you walk? Can you prepare complicated meals? Simple meals? How do you manage going to the toilet? Any disasters? Do you cope with social occasions? It really is great fun trying to show off about your disability, outlining all the ickiness we live with.
The ‘document of doom‘ (said in a deep, echo-y voice) is complete…
#multiple sclerosis #chronic illness #disability #MS Life