We're all Cheats Now

I don't know if you saw this article yesterday, it was, after all in the Express, the Mail and the good old third wheel of benefit attackers, the BBC.

"25k "Disabled" cheat caught on water slide" is the title of the article, accompanied by a picture of pure joy as the woman whizzes down, caught on camera in what the article implies are her own holiday snaps.

Now, the woman pleaded guilty. She had claimed she was "too weak to walk any significant distance without crutches" and she was in receipt of both the higher rate care and higher rate mobility components of DLA. So that's that then, job done. Another evil scrounger banged to rights m'lud.

Except Houston, we have a vast problem!!!

Anyone with a fluctuating condition (and there are millions of us) faces an enormous quandary when filling in either DLA or ESA forms, but particularly DLA. You see, some days we might be quite well. Goodness, we might even (whisper it) be able to enjoy a water slide!!! We have to fill the forms in as though it is our worst day. Well, my worst day is an attractive montage of "nearly dead." I can't get out of bed, can't walk at all, can't eat, vomit every twenty minutes, shove needles in my buttocks to control pain and nausea every 2-4 hours and sometimes my poor little body shuts down altogether, threatening to put me out of my misery with some kind of dramatic stroke/seizure/heart weirdness.

So what to do? I still have a "disability" it just doesn't conform to their narrow little idea of someone who's legs don't work. I have been lobbying hard to make ministers see that there are other parts of the body, but as yet, we are still living in a leg-tatorship.

If the forms put me in a quandary, imagine how the assessors or decision makers at the DWP feel! DLA is meant to acknowledge the extra costs of being disabled. I have many extra costs to cover - £60 a pop for petrol to get to and from my hospital every month, around £100 more to enable me to buy the very expensive food supplements I need. Night time care (we won't go into details, but it isn't pretty)

I am told I ought to qualify for both higher rate mobility and higher rate care.

So what then? No "happily climbing cobbled hills and bounding down steep steps." for me or the millions like me? No swimming or having fun with the kids on good days? Even her red bikini was too cheerful, presumably only drab grey will do for parasites like me. 


I had countless messages yesterday from people in utter misery. The article states that "DLA is reserved for the most severely disabled members of society". Well, only lately. Now, when they say most severely disabled, they mean people who are totally incapable of any meaningful independent actions, but in fact that wasn't the point of DLA at all, it just got more and more draconian over the years.


In the last two years or so in our leg-tatorship, anyone who doesn't conform to this political definition of disability feels that they simply mustn't have any kind of life at all. I regularly get messages or comments from people who are too scared to leave their homes at all. I am constantly horrified by people who know that anything they try to do may be caught on camera and used against them. We live in a culture of fear that is just so sad. 


It didn't used to be like this. There was a respect, a sense that you deserved a little dignity. Now we all question everything we do every day. Far from enabling us, society is further disabling us - taking everything away in exchange for a few quid that keeps us living in poverty. I'm ashamed of many aspects of our current welfare provision, but this shames me more than anything else. 


******


A while ago, I wrote this post, and rather than write it all over again, I'll re-post it here. I hope it gives others a little strength and reminds people that just because we're sick or disabled, we're not criminals and no society that calls itself a democracy has the right to make us feel that way.  

"you can watch me if you like. Take your pictures, twitch the curtain, send me forms and summon me to assessments. Doubt me, judge me, even try to take away my dignity, but you will NEVER take away my shoes. 

If I have to use a wheelchair, then surely it's time for the 8 inch hooker heels? (Electric-blue satin with never ending chrome spike heels. If I can't walk anyway...) If I feel like wearing fake-fur and ripped leggings I will. I will wear red lipstick and paint my nails gold. If I want to go to dinner with friends and sip cocktails and nibble tapas and pretend, just for once, that I won't pay for it dearly later, then I will. I don't do hair shirts and self-denial.  

If I have a rare good day, amongst the searing pain and endless vomiting and I want to dance, then I will dance. Joyously, because I know that joy is fleeting. If it puts me on the floor, I will still dance, because I am free. You can't tell me never to dance. 

If you follow me walking my kids home from school one day you might see me chase them, giggling until we fall in the crunchy piles of autumn leaves. Will you see the wince I try to hide as we carry on home? Will you notice my six year old take my arm because he's already learnt what giggle-chases cost me? But I vow to chase my kids whenever it might not kill me.

If I see your hypocrisy clearly, I will write about it with scorching fire.  I will tweet from a hospital bed, with my drips and my bleeps and my needles and tubes. Read it if you like, you might learn something. Writing is all I have then - did it ever occur to you I can dictate? 

At weddings, I will wear a hat. An enormous, wide brimmed, floppy hat, with freesias stitched into the brim. I will hold my head high, push my shoulders back, paint on a dazzling smile and sip champagne. Life and soul for the hour or two life and soul is required. But will you see me when the mask slips? When my soul can’t cover for my life any longer?

I can transform, butterfly-like with expensive skincare and will-power. The grey, clammy, puffy little face you know will emerge, glowing and radiant, my eyes sparkling, my hair shiny. Like Cinderella, the sheen will fade by midnight, but you might not notice, busy as you are marvelling at “how well I look.”

One warm, summer afternoon, when the breeze feels like silk, I will take a motorbike ride with my husband, racing through hazel lined lanes across the rolling South Downs. I will gulp in pleasure and live a year in those few, adrenaline-fuelled hours. I will pull off my crash helmet, shaking my hair and laughing at life. I wonder if you'll remember how little my life normally gives me to laugh at?

So, whatever money, or security or comfort you try to take from me, all those other things are mine. Chronic illness takes away almost everything you ever took for granted - ambition, spontaneity, careless energy, dreams, independence - sometimes even love. When any of those things come fleetingly within my grasp, I will grab them. 

Wearing an Elvis-print mini-dress and pink polka-dot Jimmy Choos"