My New writing Place

I am writing this from a shed!

Yes, that’s right folks; I have been driven out of my purpose-built, wheelchair accessible bungalow in search of refuge.

What, I hear you ask, precipitated this unplanned exodus to the territory more usually associated with the male of our species? I’m not trying to break new ground by challenging stereotypes that exist in relation to gender and disability, or experimenting with ways to avoid the Bedroom Tax.

The truth is, I am just escaping running repairs to my resident disability equipment.

My electronic bidet toilet seat has, metaphorically speaking, gone down the pan. Last weekend I hit the “wash “ function, only to be greeted by flashing LEDs. The expected water-jet was replaced by a pool of water around my feet. Picture the scene; mobility-impaired thirty-something with jeans round ankles, contemplating how to navigate the emerging crisis situation. I had, somehow, to stand-up and swivel my body back into my wheelchair – interesting and rather scary when you add ceramic tiles and, by this point, a considerable amount of water to the scenario. I eventually managed to extricate myself using a towel, a pair of woolly socks and one of those grabbing sticks that occupational therapists are so fond of.

What to do next? I frequently meet people who assume all equipment needed to live with a disability on a day-to-day basis is somehow miraculously provided just like that! Indeed, a few years ago, a taxi driver managed to slice through the back of my wheelchair with his boot lid. He just said “…oh well the hospital will get you another”. He seemed unable to comprehend the idea that, like he with his car, my chair was my responsibility.
I live in the UK, a country with a health and social safety net that aims to help those who need support and equipment. But, the hard reality is, accessing the help you need can be a long and gruelling process that many people do not have the time or energy to face. For example; I spent nine months last year trying to get some support in order to access the community more easily. It took several weeks to get a basic initial assessment of need. At one stage, the situation began to resemble something written by the late, great Douglas Adams. I expect to find my case notes filed along with the Vogon plans for the destruction of the earth. I am still trying to find the sign: “Beware of the Leopard”!

The daily living equipment I have has been purchased, installed and maintained by my Mum and Dad. My Dad has become the custodian and maintainer of the various disability gismos. To succeed in this job, he has at required the skills of a top-end surgeon, interwoven with a biblical amount of patience.

Since moving into the bungalow five years ago, I have become convinced that modern technology hates me!

It has taken me three and a half years to persuade my television that there really is a digital signal somewhere out there. In terms of disability, all those gadgets, marketed with the promise of giving me more freedom, making me less reliant on others, all great in theory – in reality seldom work out that way. It has at times felt like a war of attrition, occasionally escalating into all-out open conflict. One example being my front door.

You open and close yours by hand don’t you? I don’t. I have a fob, like the ones used for electric garage doors. There is one button to press to open the door and another one that closes it. Woe betide any visitor who tries to use the handle (why the manufacturers put it there I don’t know) -this breaks the door. If you break my door, trust me, you don’t want to buy it; you’ll also be screamed at by me.

For months I would get up and get ready to go out, press the button on my key-fob to open the front door and then wait for one of three things to happen (the tense part).

It might:-
1) open and refuse to close
2) open very slowly, accompanied by a worrying beeping noise
3) lock me in my home.

This made the first year in my bungalow interesting to say the least! More recently, the more general household appliances decided to get in on the act. I was bewildered when my central heating seemed to turn itself on unbidden, in what passes for High summer on our fair isle. This went on for a few weeks until, one day, I got home to my very own sauna. I wracked my brain; the remote control thermostat said the system was turned off but the radiators were activated. This would occur randomly at all hours of the day or night. In the end, we found out that a newcomer to my street was doing the job with his car key fob. I have begun to wonder if the gadgets are conspiring against me to test my sanity.

Is this a sign that a couple of toes have crossed that line?

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