Monthly Archives: June 2013

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?

All Dressed Up With Nowhere to Go

In less than two months I will be 35 years old. My imminent feet-first roll into decrepitude has been marked by two events: the arrival in my life of a powered wheelchair (my shoulders are demanding better working conditions:- it’s all got a bit Scargill v Thatcher with my shoulders telling me they’re not for turning); and the discovery that programmes I watched as a child are now been repeated as part of retro cult television programming.
I saw a trailer for the pioneering 1980s children’s gameshow ‘Knightmare’ and had a flashback to my childhood.
Myself and a couple of friends considered applying to take part, to take up the quest, navigate the dungeon and emerge triumphant at the end. However, the idea was short lived. We figured we were on to a loser as two of us struggled to tell left from right and the third couldn’t side-step outside without the parallel bars we used in physiotherapy. Oh, those heady days of social exclusion.
I am happy to report I have now just about mastered the whole left and right concept. Well most of the time. At this point I have to confess to being secretly thrilled when I successfully manage to navigate an unsure taxi-driver around my estate; first left, second left, never felt so good.
I should also tell you that I spent some 18 months trying to learn to drive a car, with some very interesting results. I once managed to “bunny hop” an automatic car. My friends tell me this cannot happen. It was spectacularly jerky and felt like it. The only direction I could manage with any kind of finesse was reverse and emergency stop. I gave the lessons up as a bad job after some sound advice from a Clinical Psychologist I was seeing at the time.
My newfound directional competence was put to the test recently when, after many months of waiting and being permitted only to use my power-chair indoors, the big day for the Electrically Powered Indoor Outdoor Chair (EPIOC) assessment arrived.
This is the driving test that qualifies me to use my power-chair outdoors. When I first read the acronym on the letter I half expected to be greeted by a furry alien created by George Lucas.
I had spent months debating using the chair full-time; it sat in the corner of my lounge for a while as I tried not to think of it as a spectre in my future. What I would be reduced to as my condition deteriorated.
I spent a month using it nonstop one snowbound January. Having put on a stone, I decided this was a bad idea. Periodically I would catch glimpses of myself in my glass oven door and would have to look twice to check it was really me. I hadn’t realised just how much my wheelchair has become part of my image, a second skin I wear. Its colour and style chosen to reflect who I am and how I want to be seen. The chairs I have had are custodians of a lifetime of stories and adventures, keepers of the secrets of a misspent youth.
The gentleman at the EPIOC test really put me through my paces, just think of a horse doing a dressage demonstration and you won’t be far off. He proceeded to send me over a piece of grass to show what terrain the chair would cope with; an emergency stop on a steep incline, drive over uneven terrain, go up and down kerbs – forwards, then the same in reverse. Cross a busy road – great when you have poor depth perception and so struggle to judge distance of approaching vehicles – and following someone in a chair (similar to a motorbike test) to direct me around the course.
The major difficulty on this day was transporting myself and the very big chair to and from the assessment venue. I had tried to arrange a taxi for a week, only to find that very few were available that could accommodate the chair. Most accessible taxis are tied up on Social Services contracts and not for public use.
So, I am now all dressed up with nowhere to go, I have a fantastic chair, but no means of transporting it anywhere so I can use it. Ironically, I could get an accessible car through ‘Motability’, but I cannot drive and have nobody to drive it.

What’s Your Name

“What’s your name?” This question for me is a kind of modern day torture; forget the rack, forget thumbscrews, forget hanging, drawing and quartering; forget even Chinese water torture, my name can bring me out in cold sweats of terror that the Spanish Inquisition could only hope for. By now, I bet you are thinking, “So what’s her problem?” and perhaps more to the point, “What the heck is her name?” I asked my mum the same question aged six when I was unable to recognise what my teacher was calling me, in a class of ten kids she could not be bothered to learn its pronunciation.

To answer your second question, I am Anika Alexandra Baddeley. The Anika is pronounced Aneeka, although my teacher at that time persisted in calling me Erica for some reason. My name was such a problem as a child because I was an undiagnosed dyslexic (not the best career move for a writer) and yes, there is more, I also have cerebral palsy (CP), oh boy does that ensemble get interesting when you are filling in a form. This is a condition that causes problems with mobility and coordination and has meant that I have been a full-time wheelchair user for 14 years.

There are essentially three things you need to know about me, aside from the more obvious things like if you have steps and no downstairs loo, it can be socially awkward to have me in your life. The first thing is I love to laugh, which judging from the lack of the accessible toilet facilities encountered on an almost daily basis is a good job! The second is a near, or so I am told, obsession with time and organisation. Well what can I say, being three months early for your own birth is a dangerous precedent to set! Thirdly there will be at least one bag involved in any meeting with me, normally a rucksack that is filled with a mixture of books, research, my writing and a bewildering array of assistive technology, that is frequently trying to make good its escape. Last week I found my portable talking book player engaged in a mating ritual with my ipad, the spare catheter leg bag didn’t know where to look!

So, I have a name that took me 11 years to learn to write and which I still have to take a run at to say. You are reading this and thinking, things aren’t looking very rosy thus far but, honestly I enjoy a joke, even at my own expense. I chuckle guiltily at the minor misfortunes of others and take a degree of pleasure at witnessing the pricking of the protective bubble of pompous people. I am a 35 year old woman with two disabilities but I want to make this clear to anyone reading that I intend to write about some of my stranger experiences (and believe me, my able-bodied friends tell me that some are seriously strange) caused by my disabilities and to sometimes make a serious point without scaring you away.

To tell you a little more about myself I was diagnosed with CP just before the age of two and sent to special school from the age of 3. Before I began attending school a specialist physiotherapist visited me at home with the aim of increasing my mobility; Mr Berkshire began implementing a treatment plan with a list of do’s and don’ts for my parents to follow.   There were regular stretching exercises which looked like something you might find in a medieval torture chamber, except they replaced the rack with something called a Standing Frame, a metal device I was strapped into for an hour every day to promote good posture and introduce me to the idea of being upright. By the time I was five I was able to walk although the finished product was wobbly to say the least; picture the ball in a pinball machine, that was me bouncing off walls and I would wave my arms about like a windmill for stability, this had the effect of turning the good old inventions of mittens on strings into a playground offensive weapon.

I attended school for 16 years, this didn’t achieve a great deal in terms of the skills you might have expected me to gain. I could read and write at the level of a seven year old and  had a severe stammer. On a more positive note, it gave me a basic working knowledge of several common and some not so common disabilities, their treatment and prognosis. In my school you were divided into those who were able to type and so obviously destined for the public sector, those who would fit into working at Remploy and “the rest”. This   resulted in my special needs career adviser sending me a letter decreeing  that she had “wracked her brain and come up with a dead end”, in terms of placement for me. How do you solve a problem like Anika? Her answer was “stay in education,” where my needs could be better met. This statement tipped the balance and resulted in my move to mainstream college where dyslexia was diagnosed. My ‘Eureka’ moment!

What am I now? I studied Crime and Deviance at university where I became slightly obsessed with social measures, the construction of deviant behaviour and the work of Stan Cohen. I attained both undergraduate and post graduate degrees. All this while proclaiming very loudly that I WASNT GOING TO DO ANYTHING DISABILITY RELATED, that would be too much like a busman’s holiday. I then promptly proceeded to graduate, and end up on that busman’s holiday with support worker and assistive technology in tow; an adventure from which I have yet to return.