Tag Archives: personal

A Dark, Divided Century

A few weeks ago I went to a local history event to mark the centenary of the outbreak of the First World War. The idea of the event was to commemorate and explore the different aspects or the conflict and look at how it has shaped the society we live in today.

There were living displays, men and women in period dress demonstrating everything from joining up for the Kings Shilling, to examples of battle kit that was issued. I have to say I was more than a little shocked at how meagre the kit was, it seemed to consist of little more than a scratchy woollen uniform, ration tin, shoe cleaning kit, a gun and a tin hat. It was both scary and poignant to think of thousands of young men, some little more than children, despatched to a hostile frontline.

Soldier's kit

The railway station where I live has remained remarkably unchanged over the last century, in fact when I am waiting on one of the three platforms to go off on my travels it has many times made the past seem somehow closer when I am on the platform. If you removed the electric digital announcement screens, it would be like going back in time. The ghostly figures boarding trains in their thousands become tangible beings; the ones who boarded a train compelled by social expectation to be men and fight never to come back. The entrance to Platform One now has a war memorial in remembrance of those who worked on the railway and were lost in the conflict.

The Great War, as it came to be known, saw change and development on several levels, social, technological and medical developments reshaped our society. The years leading up to war had seen growing support of the women’s suffrage movement that campaigned to give women the vote and afford them the same rights and opportunities that were available to men. However, war saw the suspension of political protest and direct action. Women took on a new place in society, they worked in jobs that were previously considered to be the preserve of men, they stepped into the breach taking on dangerous jobs working in munitions, nursing and driving ambulances on the frontline, proving equal in worth and ability to men. For women, war became a means to demonstrate the need for equality and recognition, one of the few positives, yet unintended consequences of war.

The event I visited had several stalls each chronicling the different aspects of life in war time. It was at one of these that I came across a period actor talking about developments in medicine that were a consequence of war. He talked about Walter Yeo, a sailor who sustained massive facial injuries in the Battle of Jutland. Yeo underwent pioneering treatment under the care of the groundbreaking surgeon, Sir Harold Gillies, who developed skin grafting as a way of treating individuals with serious skin wounds or burns. Walter’s face was painstakingly rebuilt over many years. Whilst Yeo was still described as having a severe disfigurement, he had significant function returned to him.

Walter Yeo (courtesy of Wiki)

Professor Roger Cooter wrote about the impact of war on medical advancements. He discussed how the First World War created an opportunity for medical development due to there being a substantial number of combatants presenting with very similar injuries.

There were 2 million disabled veterans who returned home at the end of World War One, who suffered a variety of injuries resulting in long-term disability, both physical and mental. This war made disability more visible and a pressing social issue. It resulted in the opening of the original poppy factory in Richmond in 1922 closely followed by Lady Haig’s poppy factory in Edinburgh in 1926. The idea behind both sites was to employ men who had suffered life-changing injuries in the conflict to provide them with a livelihood. This was the first time in history that society began to accept disability as part of social life and its responsibility. Disability through wounds became seen as almost an honourable state with the Silver War Badge being issued to soldiers who had been discharged due to their injuries for their service.

I am grateful for these individuals who, unwittingly, blazed a trail for me. They helped to create a world which was of a mind to accept me with all of my physical limitations. They fertilised the idea of an inclusive society.

I will remember them.

A painting I did to commemorate the centenary of WW1
A painting I did to commemorate the centenary of WW1

 

The 2nd of my Remembrance paintings
The 2nd of my Remembrance paintings
Advertisements

The Big Red Button

The last ten to twenty years have seen an increasing reliance on technology within daily life; today most people will have a mobile phone, personal computer or digital music player. Trips to the library and the supermarket are now increasingly dominated by technological encounters, self-checkouts seem to be conspicuously replacing human contact and last year I even came across an article about the idea of a machine that replaced the family doctor, a step too far in my opinion. I only have to look at some of the errors made by my voice recognition software to see the possible pitfalls of this idea, it frequently offers up bizarre approximations of what it thinks I have said leaving me to wonder about booking it a session with a psychoanalyst.

Disabled people are often the guinea pigs for, and recipients of, technological innovation such as alarms to summon help or remote communication devices to keep us safe. These are intended to be cost effective to allow for an increasingly strapped public purse and many are now an established part of the social landscape. In reality I have found that technological reliance produces some interesting and sometimes funny results.

Many people unfamiliar with disability assume that we disabled people live in specially adapted environments away from the problems and stresses of general life, that we are monitored and kept safe from harm. I started my adult life in one such sheltered environment, a block of flats purpose built for us wheelies. The place had an alarm system, in the form of a red button on a string around my neck that I could press for summoning help should I fall or become unwell. An alarm would sound after pressing the button and a microphone in a box next to my bed would allow me to talk to someone to arrange assistance.

I had lived in the flat for some years and never had to use the alarm for anything. To be honest, I always found that keeping a mobile phone with me worked just as well. However, early one Wednesday morning I was catapulted from sleep by a very loud noise. In my drowsy state I pressed the button on my alarm clock, but the noise was still there! I opened my eyes, squinted at the clock and realised it was only 5am. As my mental capacity, was somewhat fogged by interrupted sleep, it was a few minutes before it dawned on me that I had no mains power at all, and that the noise was the back-up panic-alarm battery kicking in. Did we have a power cut on the complex? I took stock of the situation. I was in the pitch black, lying in a bed that required electricity to raise me up and allow me to get out of it. Was this one of those emergency situations the button round my neck was meant for? I decided it probably was.

“Hello Miss Baddeley. Can we help you?”

I explained the situation to the disembodied voice on the other end of the intercom system. The response came, ” Have you paid your bill, or put enough money in the meter?” I explained that I have a quarterly bill, no meter and that I thought it was only a trip switch that had been activated, not a complete loss of supply.

The operator seemed not to grasp my situation, so I changed tactics and asked if someone would be able to come out to me? They said they were only able to give me a phone number, that I would have to reset the power myself and work out which of my appliances was causing the problem. At this point I was losing the will to live. I, like a lot of people, had assumed that the operators at the call centre would have been aware of my disability and situation, as every six months or so I had filled in their form, but it seemed that this not the case. I told the operator it was sorted, gave up and phoned the fourth emergency service, otherwise known as “Dad”.

I was left wondering what the point of the alert system actually was? If the idea is to safeguard people, don’t get me wrong, I don’t expect anything resembling the Milk Tray advert, with a bloke parachuting out of the sky, or another similarly exotic entrance, but I was expecting some useful suggestions for the situation I was in. This was a service I was paying to have access to. As it was I was left literally blundering about in the dark.




Proof that Disability Awareness is on the Rise

I never stop being surprised by the odd and often intrusive questions I am asked in relation to my disability. I can get into a taxi for example, and before I have finished fastening the seatbelt the questions begin, “What have you done to your legs then?” In response I find myself doing complex mental calculations that take into account length of the coming journey, my mood, level of patience and the need to explain a neurological diagnosis to someone who may well have never heared of the condition I have.

On a bad day, early in the morning my response would be, “It’s just something I was born with.” in the hope that I can shut the conversation down and get on with my day unencumbered. If I have time on my hands or am feeling motivated to spread the word, make a difference and in some small way put a dent in expectations that ultimately bring about social change, you will get an answer that begins, “Well it’s not so much legs as brain.” then going on to explain the risk factors of being born prematurely and the effects of multiple respiratory arrests on the infant brain.

Many people think the past 20 years has been a watershed in terms of social attitudes and this is true in many ways. However, I am still surprised how people constantly assume that you want to discuss every aspect of your life in mind numbing and yes startlingly intimate detail. On the positive side this does mean that at least people think there is a possibility of my having a significant other, and this is progress in itself.

The sociocultural distance travelled was pointed out to me a few years ago in a rather unexpected and amusing incident. There is a small corner shop on the high street, near the flats where I used to live, the sort of place you could pop to when you were running short on milk. Most of the buildings locally were erected well over a century ago and as a result they were not especially wheelchair friendly. The shop in question had three steps up to the front door which made for an interesting retail experience. When shopping here I would have to stop my chair, bang on the window, or grab a fellow shopper on their way inside to get the assistant’s attention. The shop assistant would then come to the door, I would shout up my order, they would fetch the items and bring them down to me, I would pay, they would go back in then return with my change and a receipt.

One hot Sunday in July I was sitting in my flat’s communal garden with a friend, we both wanted an ice-cream and I decided to throw caution to the wind and go and get them along with a packet of Hobnobs as my parents were visiting later in the afternoon. I set off to the local shop to get them. I got to the shop and went through the usual routine of banging on the window, the elderly male assistant stood at the top of the steps and I called up the order. All was going as usual as I sat texting friends whilst waiting for the old man’s return. He came back after a few minutes with two Magnums wrapped in newspaper to slow their melting, he placed them silently in my lap along with a packet of ……… condoms!I sat staring at them, featherlite and ribbed for her extra pleasure, then looked up at him; he stood quietly unable to meet my eyes. I handed a £10 note over, he dashed up the steps and came out in a flash with change and a receipt and I wheeled myself hurriedly away. I imagine he thought I was in for a very interesting afternoon, that didn’t involve dunking things in tea!

The Great Leveller

Mark the day……… I have been waiting two and a half years for this moment. I finally got to cut the ribbon at the official opening of what has become known as “Anika’s toilet”.

I’m serious, we had a cake, ribbon and sparkling white wine to celebrate, with an audience of 12, two of whom had travelled about 50 miles to be there. The only thing I didn’t have to do was a test use of the facilities with everyone watching, although I was photographed flushing it.

I will tell you how this moment came about. I had been volunteering with the Dyslexia Association of Staffordshire for 4 years, and also receiving support for my academic writing from them, when 3 years ago they were in financial difficulty. Fortunately, they were able to find cheaper premises to reduce overheads and moved there in January 2011. However, there was a bit of a snag, the new premises had no wheelchair accessible loo. This was to make life very interesting for me. In order to continue volunteering, I had to limit my fluid intake for 12 hours before going in and continue limiting my drinking for the time I was at the centre.

It gets better, at lunch time the centre manager and I would undertake a mini expedition to the local supermarket which had accessible facilities. Well, they were accessible if you could find the person with the key to the padlock on the door. The first time I saw the size of the lock I wondered what else they were hiding in there?

These expeditions lasted for over 12 months and resulted in many a lecture from health professionals who couldn’t understand why I persisted in volunteering in a place without suitable facilities. They continually reminded me about the danger of urine tract infection and catheter block-offs if I did not have sufficient fluid intake. I am fascinated by people who think like this, as well as the ones who think that since the implementation of Britain’s landmark Disability Discrimination Act almost two decades ago, some kind of architectural magic occurred and all buildings became wheelchair friendly, a state that we are still many years away from achieving. Thus I have to point out that if my life was determined by the provision of suitable facilities then I would be at serious risk of being bored, depressed and home-alone.

Last year I had to admit the health professionals had a point after fighting off a particularly nasty urinary tract infection. I had to stop attending the centre and received my support at the local library which, being a new public building, had an accessible loo.

Such became our obsession with toilets that one morning as Louise (my support worker) was pushing me into the library she noticed a sign attached to the glass door that said, “Apologies for any inconvenience – due to repair work, the W.C.s will not be open to the public today”. We arranged ourselves on our usual desk and Louise went off to find out more about this closure.

“Excuse me”, she said to the librarian, “is the disabled loo closed too?”.

“Too?” queried the librarian.

“Yes, your sign says the loos are closed to the public due to repairs, I just wondered if that included the disabled one too.”

“I’m not sure what you are talking about?” said the librarian with a puzzled frown.

“The sign about the loos on the way in.”

“Could you show it to me please?”

Louise patiently took the librarian to the front door and pointed to the sign.

With a kind smile, and speaking slowly the librarian read aloud, “The sign says, ‘Apologies for any inconvenience – due to repair work, the P.C.s will not be open to the public today’ dear.”

After apologising profusely to the lady, and laughing a lot at the error, Louise returned to me and told me what had happened.

“Well Louise, it must be contagious.”

“What is?” she asked.

“Your dyslexia,” I replied.

This story has done the rounds with my family and friends now and still makes me chuckle when I think about it. It is reassuring to think that we can all make these sorts of mistakes, even the woman who corrects my spelling because of my specific learning difficulty.

Flushed with success!!
Flushed with success!!

Doctor Doctor, I have a pain in my foot


I was 11 years old when I realised that the type of disability you had affected how people saw you. I had of course grown up with people pitying me and once a woman pressed money into my hand as I sat in my wheelchair whilst parked outside a shop with steps, waiting for my mum on a Saturday morning. A memory that makes me squirm uncomfortably to this day. Similarly, there was a time when my parents bought a cane chair from Argos and while we were standing in the street with the plastic wrapped chair, a passer by enquired if she could buy a ticket – she thought we were raffling the chair for charity.

These were isolated, bizarre, funny stories that we laughed about and shared with friends. When I was talking about this with another friend with CP, she told me she had been given a Scottish five pound note in a similar incident. I have to say I never elicited that amount of generosity, even when a tartan knee blanket was added to the equasion in winter. This experience of the pity of others was clearly a common theme amongst my peers in wheelchairs.


At this time I could still manage to walk short distances though I looked as if I had had a very impressive night on the tiles. This, combined with an impressive fall, had resulted in a very painful ankle. After a lengthy wait in Casualty we were ushered into a cubicle and a young doctor arrived. I should tell you that I was in my Blackbird wheelchair (the children’s chairs at this time were either black, blue or fire coloured and, for all their sleek sounding names, had the style and poise of a Reliant Robin). After glancing at me the doctor turned to my mum to ask what the problem was, so she told him about my fall. Bending down he asked me to stick out my tongue which I obligingly did, he continued by asking me to push his hands away, grip his fingers and then close my eyes and touch my nose.

After these bewildering instructions, he turned back to my Mum and asked, “What is her mental age?” Confused by this point she replied, “Eleven, she’s eleven.” The doctor looked decidedly irritated and bending down to me he asked, “What is 2 x11?” “Twenty-two,” I promptly responded. At the time this was the only part of the 11 times table that I knew!

This story has passed into family legend as one of the strangest medical encounters I have ever had for what was, in the end, a sprained ankle. Coincidentally, it was also the year of the Oscar-winning performance of Daniel Day Lewis playing Christy Brown, the writer and artist with cerebral palsy. I suppose the working hours of junior doctors meant he did not get to the cinema much. Perhaps if he had seen the film he would have asked me to write the answer using my foot which, even when pain free, is not similarly gifted.

Have Chair, Will Travel

Over the years, travel with a wheelchair has provided friends and family with a good laugh and left me with plenty to write about. I have found that interesting things tend to happen when I am out of my own environment generally. Add jet-lag to the equation and things start to get interesting!

Over the course of my childhood I visited the USA three times. Our family holiday to Vermont really sticks in my mind. We arrived at our first stop, a quaint little guest house by the name of “Mavis’s”, tired and jaded after a long flight. I went into the bathroom to use the toilet and, in the process of standing up, I put my hand on what I thought was a wall only to discover it was in fact a pristine white shower-curtain. Unfortunately I only realised this when I was lying half in, and half out of the bath tub, draped in the aforementioned curtain, the supporting pole of which had cracked me on the head on the way down!

This is not to say that all my state-side adventures were negative. They were, in fact, my first experience of integrated design. Aged eight (1986), I stared with wide-eyed incredulity at an all-weather, outdoor, “stair-lift”, designed to descend 200 feet over a cliff face enabling my family and I to experience a boat trip under Niagara Falls. Coming from a country that, at this same point in time, confined it’s rail-travelling disabled citizens to transit in the guards van, with the luggage. The Niagara “stair lift”, along with that other state-side invention the “handicapped bathroom” was a mind blowing experience.
image
It amazes me that, more than 20 years on from my experiences in the USA, the UK has yet to achieve even half this level of seamless integration.

Recently, on weekend educational seminar, I began to wonder if Iain Duncan-Smith had struck a deal with the hotel I was staying in. Within an hour of arrival, I had already been forced to undertake something that resembled a Paralympic event to get into my room with my luggage. Then, my leg spasmed while I was trying to get out of my chair onto the kingsize bed resulting in the emergency cord winding itself round the heel of my boot and alerting reception. (I have something of a reputation with pull cord alarms. – I was once in hospital, trying to undress, and I got my arms tangled up in a mixture of bra straps and intravenous drips, resulting in my having to pull the assistance cord using my teeth). It seemed the demon had struck again! Fortunately, the lady on reception was quick to call and instruct me in how to turn the alarm off. It was at this point I learned that the hotel room designers had, it seemed, not planned for a solo disabled traveller.

The alarm “cancelling switch” was on the other side of the bed and there was no room for my chair to fit down the gap between bed and wall to deactivate it. With the alarm ringing in my ears I threw myself onto the bed, disregarding everything I had been taught by my paediatric physiotherapist about the need for “control”, and proceeded to “commando crawl” my way towards the headboard where the off switch was located.

I rather ungracefully achieved my goal and wondered fleetingly if my new found abilities would threaten my eligibility for Disabled Living Allowance – if observed.

One of the things that frustrates me about welfare reform is that the people reforming and implementing changes to disability benefits have probably never found themselves sitting in an empty bath with their clothes on to see if using the bath with the adapted grab-rails is A) possible and B) safe – the answers being “just about” and “not very”. (We’ll excuse them trying this stark naked and wet!)

The idea that the social change and inoculation policies implemented in recent years somehow reduces the need for benefits like DLA is, I have to say, lost on me.

When I have a whole year of travel on public transport without significant access problems or I can book a hotel room that advertises that it has the wheel-in shower I need, and be sure that yes, it really does, perhaps I will think again!

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.