Write what you know…in all the
magazines and blogs that’s what they are commonly given to say to those just starting out. But not me. Oh no. I was told…writing is a therapy, a relief, it’s a way to break the confines of your position, your condition. Pour it out onto the pages and feel better. Get it out. Better out than in. Purge yourself.

Which, when you think a little harder about it, could be seen to put my words on a par with vomit. Or bile. Or worse…if there is anything worse. Nice.

There has always seemed to be this translation glitch – it’s a polarised anomaly. I can see it. I can feel it. You can’t. It’s invisible to you as you live on your side of the tracks. Me, I can count the connections, see the circuit board, hear them crackle, smell the burning.

My name is Sophie. I am what is called ‘disabled’… that’s what it says on my records anyway. The word disabled makes me think of being disarmed or decommissioned. Of being stopped in my tracks. Of being taken apart. Of silence and stillness. The latter of which is quite ironic really, given I’ve got Parkinson’s. To me, disabled says I do not work. I do not function as intended. I like to think that I am not broken, I am a special edition perhaps. We are all special. At least that’s what the TEDtalks say.

Back to that glitch.

Disability does not turn us into angels. I know I know, the number if times you see posts from the (normally recently) diagnosed or afflicted where they say something along the lines of…
“I thought my life was over when [insert disability evolution story] happened to me. Yes, its been really tough [optional insertion of rants and complaints] but there has also been a silver lining [extra points if the exact phasre ‘silver lining’ is used]….this whole experience has made me realise…

1. who my real friends are
2. How kind people can be
3. what is truly of value Iin My
   life [clue: its never a` Rolex]
4. [insert your own truth here]
   Im sorry if I sound jaded but I’ve read it so many times now. It MAY be because the majority do get such revelations . Or it could be down to the posters feeling they HAVE to be upbeat about their situation so as to provide comfort and ally others’ fears as to their welfare and the risk that the reader may be called upon to help out. The truth is that, bar a few paragons, most of us feel at the very least awkward around disability (until we get used to it). Many do not want to be at the care coal face. Why would you?!
   But then….it hits me hard…now I KNOW that coal face, the daily grind of just trying to keep up with things I never even thought about (like pulling out a plug or holding two mugs of coffee)…now I have my Blue Badge…my PoV has become more militant. I am more interested in the development of the frankly barking benefits systems we have in the UK for example. Of course I am. I live it. The REAL challenge is dealing with that glitch. Strip away the barrier so that everyone can at least understand at a common level. If we had mutual understandings of how life is at a micro level perhaps we would get closer to equality. Even change.
   So, write what I know? Or what we ALL should know? I think I’m ok with the second choice. I think.