It's been a rough few months. After six plus weeks of voice loss and being too floppy to function I'm more than a bit fed up, a state of mind not helped by the DWP's continuing and blatant spin war against benefit claimants. When you can't get out for weeks on end, can't find the energy to get washed, dressed or even swallow properly, life becomes narrow and focused on nothing but existing. Memories of happy times are more precious than anything - snapshots to hang onto until the weather and health once again improve.
This past year I've acheived alot, something it can be hard to remember when I'm vomiting out of the back door at 6am or swigging Oramorph like it's lemonade. But, one day stands out above all others; a day when somehow, miraculously the gods of hormones, floppy muscles, sunshine and corsets managed to combine into a pinnacle of acheivement. A day in which I walked almost a mile.
All the physio, all the deathwalking practice, all the medications on this one day paid off and it was glorious. Even the
It's the furthest I've walked in years. Despite the pain I felt amazing when I was doing it and during these past weeks I have fantasised back to that day more often than is probably healthy. It wasn't just the distance, but that for those few hours I felt in control of my body, like it remembered how to work properly.
But the fear of being accused of benefit fraud intruded on that incredible day. Whilst we were walking, despite the fact I was accompanied, despite the fact we had my wheelchair with us, both of us were incredibly conscious that if someone snapped a photo or videoed me on their mobile phone and sent it to the DWP it would trigger an investigation into my benefits. Despite the fact that I was still dislocating while I walked, despite the oramorph and other medications I'd taken to enable me to do that, despite that fact that it's further than I've been able to walk in years, that I haven't been able to repeat it since, I was afraid. Afraid to celebrate this massive acheivement, afraid to share my joy, afraid to be accused.
Just for one rare, special, oh so precious day.
And this is the direct consequence of the government's continued demonisation of sick and disabled people in the name of austerity measures, welfare cuts and protecting the most vulnerable. People whose lives are already difficult, people who 99.9% of the public would happily agree should be supported from their taxes, people who have committed no crime other than to become sick or disabled in a society which demonises dependency having their acheivements and happiness sullied by the fear of false accusation.
No-one hates benefit fraud more than sick and/or disabled people relying upon those benefits. Each gloating tabloid report of benefit fraudsters being caught doing outrageous things makes us more scared, more angry and less able to enjoy our lives on the days we can.
The memory of walking that mile, the sunshine, the sparkling sea, the company, the utter joy of completing a personal marathon will forever be sullied by the fear that on those magical days someone, somewhere might decide to report me for 'faking it'.
The video footage was shot in early November. The weather still extremely mild, but the walking extremely tough going. Almost 25 minutes of footage as wobbly as the walker have been edited down for this snapshot of a deathwalk approximately 100 meters long. An averagely 'not brilliant but not the worst' deathwalk day. An insight into how my life is usually lived, but for that one, magical, mile long day. And how 'looking fine' can be anything but.
To coin a corrupted cliche: "They can take away our lives, our benefits which enable us to live them independently, but they can never prevent our ability to soar free"