Tag Archives: writing

“S.C.out of there”

Unusually I am starting the week not in crisis. By this statement I know I am probably doing the proverbial, ‘Tempting fate.’ However, all is quiet on the home front. Then my dad arrives in the company of our lovely, working Cocker Spaniel, Scout. Scout is a girl! She is named after the central character in the American classic ‘To Kill a Mockingbird’, something I repeatedly have to explain to people who failed to have studied it at school, or who do not have a father who has it as one of his favourite books.

Dad and Scout arrived after a walk at Rudyard Lake, where dad had allowed her to explore the lake through a ‘good paddle’. Thus allowed her to acquire a considerable amount of sediment in her paws and fringes, most of which was deposited on my living room floor. My dad dutifully got the hoover out, which triggered a mammoth barking session and attempts to exact dominance over this noisy, electrical device from Scout.

Dad cleaned the area where the dirt had been deposited, leaving a ery clean patch in the middle of my floor. His OCD kicked in and he began hoovering and dusting the rest of the room so it would look eq

ually clean throughout. I did point out my cleaner was coming the next day and would have nothing to do, but to no avail.

Having a dog in our lives has proved to be a revelation, technically

Scout is our 2nd ever, family pet. Cassie, her predecessor and a Westie, was a different temperament altogether, not particularly into exploring in fact she once got lost when she squeezed under the garden fence and my mum found her in the neighbour’s garden waiting for someone to find her. It did not seem to occur to her that she could walk to the front of the house. Her single great motivator was food and the company of my nan, who she stayed with in the day while we were all at work or college. She had the acquisition of food down to a fine art. When my nan would go to visit her stepmother in respite care she would take Cassie to visit with ‘the oldies’ who would furnish her with Kitkats and other forbidden treats. Such was the mark this made on her that when walking past the home and not visiting she would attempt to drag her human companion into the entrance. Similarly, the owners of the local oatcake shop used to give her a sausage and this meant that she would refuse to go past the shop until she had received said sausage. She was my post-orthopaedic surgery present, the good effects of which lasted longer than the surgery’s, i.e. I benefited more from having her than from having the surgery itself. She wasn’t what you would call intrinsically loving, she would just flap her ears up and down to show she was pleased to see you, but she was funny to have around.

image

Scout is a different personality altogether and, I have to say, she is never more than two feet away from you. I think her middle name should be Shadow. She likes to get her nose into everything, followed thereafter by her paws and then her mouth, this is quite sweet until you find her having a discreet little nibble of your left front wheel, or running off with a pair of your socks. Phone conversations with my Dad have now become punctuated by “Scout get down” or “Scout get out of there”. I commented to my Dad that she was very aptly named having ‘out’ in her name. Some of my friends have said I should train her to be an assistive dog. I thought this sounded like a good idea and in the book I bought I was heartened to see that a spaniel was featured. I sat her on my knee and pointed at the picture. I don’t think there a spark of mutual recognition. In this book it talks about dogs loading the washing machine with clothes, the closest we have come thus far (with the possible exception of the day she made me late for art by pulling my trousers off when I was trying to put them on) was when she stole my new, relatively expensive top off the radiator and proceeded to chew it and mop the floor. Not the kind of help I had in mind. Unbelievably my new top came out relatively unscathed.

I have discovered there is nothing like the companionship, fun and love you get from a dog. Scout is a positive force for healing in the wake of bereavement. She is my Dad’s new companion in daily activity, with an endless love of walking, boundless energy and inquisitiveness. On Monday I found her in my kitchen with a pen in her mouth, looking like I do when I am thinking what to write next. I think she is getting to know us both very well indeed!

Advertisements

My Official Birthday

The big day has arrived. I am now 36. Sarah, a lifelong friend of mine (we were on the neonatal intensive care unit together when we were born) is some 10 days older than I am. It is our tradition to go out for a meal on the middle weekend between our two birthdays. It was at this celebration that Sarah decided to remind me that as of today I (we) are officially closer to 40 than to 30.

The momentous day was marked by a new acquisition, my birthday present this year from my parents was a MacBook Pro. I had been lusting after one of these for over 12 months, being a fan of the iPad – in my opinion the most ultimately disabled friendly device you will ever find – I was keen to make the switch. However, there always seemed to be something that got in the way of my making the purchase. Anything with a Mac label, seems to cost about three times as much as a Windows or android operated machine, so it was a massive outlay and one that I never could quite seem to justify. Then the inevitable happened, Nuance, the computer company that makes the voice recognition software that I use to write, updated their software.

I always follow assisted technology developments via YouTube. I was impressed with the new developments in the software however, I noticed that the latest edition of Dragon NaturallySpeaking required at the very least windows 7.1. My home PC ran on the positively Jurassic Windows 7 and so I discovered that if I wanted to try the new Dragon software then I would have to update my PC, this was a scary prospect as I had been witness to several Windows 8 stress moments. Many people I know just can’t get the hang of the new Windows operating system. On occasion my dad will fill in for my support worker; we open up the document on his computer, a procedure that is usually followed by a five-minute rant about the fact that the machine wants his fingerprint and randomly seems to place downloaded files where you least expect them on the hard drive.

I have never really been a fan of Windows 7 myself either. The main Windows operating brilliance came when they developed the XP operating system. Had I known that the Windows 7 operating system was so different to XP I would have made the switch to Mac at that point. In the week I have been using Mac I have not once had an error message, or crash. Thus far I have found that even the voice recognition software I have had such a rocky relationship with, works better on a Mac which is interesting given that the same company produces the software for both systems. The Mac is just sleek all round – Steve Jobs I salute your immortal soul!

It’s been a week of changes all round in my household my mum is currently ill in hospital and my dad has stepped into the breach. This has been an interesting and steep learning curve on both sides of our relationship. I live alone and have done so for over 15 years. This situation occurred almost by accident. My dad’s job was going to be moving location from the Midlands to North Wales, and I somewhat petulantly refused point-blank to live anywhere that I couldn’t spell. I proved moderately successful at the independent living scenario first in sheltered accommodation, that was specifically designed for individuals with special needs and latterly in an adapted bungalow, which I inherited (without the adaptations) from my grandmother almost 7 years ago. Throughout this time my main support and assistance has been provided by mum – who has hovered in the background providing physical support with tasks like laundry, cleaning, transport and more recently even supplementary medical support when my feet disintegrated slightly and required regular medical treatment and dressings. It is fair to say that she did a fantastic job! The dressing she applied thereafter more durable than those put on by the professionals.

It has been interesting and eventful to watch my dad take on his new role as provider of care and support. I had never really thought about it before but disability and its management seems inevitably to fall to mothers, and mine is particularly good at the mundane organisational requirements that are needed to live successfully with a long-term disability. This week my disabled parking permit (known in the United Kingdom as the Blue Badge) is up for renewal. The process is simple enough, you go online, fill in a form, then take proof of entitlement, a photograph and £10 in cash to your local council parking services department.

The week before my appointment, I looked out my birth certificate and the preregistration form I had already completed. All that I now needed was proof of my entitlement, birth certificates and photographs, on Sunday night I looked out the additional necessary documents and put them on the kitchen table. I had my birth certificate, and for some reason assumed that my dad had got the letters proving my entitlement to the mobility component of the disability living allowance. At my house, I asked dad if he had the letters I needed to renew my application, he responded in the affirmative. So, you can imagine my surprise when we arrived at the local council offices to discover that my entitlement letters had been left in the house. We had to retrace our steps and plan the journey for the second time. All was well in the end, but the procedure did lack my mum’s finesse!

Wheelie Good Omens

I thought things were going well. It has been a whole three months since the accessibility equipment gremlins last came out to play, so long in fact that I was beginning to think they had been successfully rehoused. Alas no. I got up last Tuesday to the sound of a loud hissing noise, my brain hurriedly came out of bank-holiday hibernation. What the hell now I sighed inwardly?

Those who follow me regularly will be aware of all my gadget-related nightmares. For all of you newcomers, the bungalow I live in is about 40 years old and six years ago, when I inherited it, the inside was internally demolished and rebuilt, mostly by my Mum and Dad. The result was a very spangly looking ensemble, which was dutifully equipped with every gismo you can get to make living with disability easier. The result was very definitely rehab chic, open plan and pneumatic cupboards. There really was no (parental) expense spared. Everyone with disability knows the manufacturers always put a few extra 0s onto the price for good measure. The thing they don’t tell you about is the hell you will experience when all these bits of kit that make you more independent decide to break down. My life is punctuated with phone calls that begin “Dad can you just…..”. Things got so bad with my pushbutton front door, that when it stopped working for about the twentieth time I gave up and had it disconnected. There does come a point in your life when less really is more. I pointed out to my Dad, who was keen to give the door one last try, that struggle as I may with the average front door, once it is locked it will normally remain so similarly, when opened it will do the same and, save for an act of God, it will move between open and shut without engaging in small acts of rebellion.
Needless to say, the all singing all dancing door has now been officially downgraded and I have had about 8 months of stress-free living. Anyway, the hissing was coming from the bidet loo. Water was trickling out of the wash nozzle, even though the tap was off. My first thought was limescale, a big problem where I live, blocking the valve. I dutifully attacked the nozzle with a heavy duty limescale remover, but there was no improvement and loos are just about the one appliance you can’t live without. Meanwhile, my Mum had arrived to help with my household cleaning. She examined the loo, promising to send my Dad down when he arrived home from work.

I couldn’t help but think that something else going wrong with the house was a bad omen. I had a trip to London planned and I get a little sensitive when I am going travelling. I begin to imagine that these little things are a sign not to venture out. The loo was easy to fix in the end, it was just a washer, phew! Perhaps, my week would be fine after all.

Friday arrived and I had a knot in my stomach. My inner child briefly whined that London is big and scary and did we really have to go? Yes, I said, putting my foot down and dragging us both out of the door. I got on the train seamlessly, thanks to the lovely organised Virgin people in red that seemed to appear from nowhere proffering ramps. This has got to be the only way to travel. I felt my stomach begin to relax. I was on the train, there was only one stop, what could go wrong? I turned on my Daisy talking book player to make a start of, ‘The Bell Jar’ by Sylvia Plath. The machine’s automated voice informed me, “Low battery. Powering off in one minute.” Well I did ask the question. Let’s just say that I was relieved to have done the paperwork for the London meeting with my support-worker instead of trusting in technology.

Two hours on a train with nothing to do, other than to just sit back and wait for inspiration to strike. I figure it has worked for JK Rowling, then I really would be able to afford to write. I managed to grab one of the train staff as I desperately needed a cup of tea and couldn’t see any sign of the refreshment trolley. I asked for help from a passing member of staff in getting a cup of tea. This lovely young man went and got me one for no charge. This must be a week for good omens.

Dyslexic, Uncovered

Last week I attended the Annual Conference of The British Socological Assocation (BSA), an event that brings together individuals from all areas of sociology. This proved to be a time of reflection upon my own journey to becoming a sociologist and the issues and barriers facing others that find themselves in a similar situation to me.

It has now been some ten years since I graduated with my degree in Crime Deviance and Society and ten years since I gained my Masters in Social and Cultural Theory, things could have been very different. I was never considered to be particularly academic as a child. I was the one who sat at the back of the class with a vacant expression. Well, I must have looked vacant anyway as I spent my formative years being told off for daydreaming.

Many of my regular followers know my background but here is a quick refresh or introduction for those of you new to my e-world. I have Cerebral Palsy, use a wheelchair and went to special school from which I made my escape aged 16 with no qualifications to speak of. I enrolled in a mainstream college and was diagnosed with dyslexia at 18. University followed. I am passionate about education, for me it is both the gift of, and key to, personal development and social stability. I often get accused of being more than a little obsessed with the education topic, such that when two close friends announced they were pregnant I was plotting their due date against the English academic calendar.

I am an August birthday, us summer-borns are something of a scourge on the educational landscape. My teacher friends tell me that “you really don’t want a class full kids like you.” We are you might say on the back foot academically speaking, invariably not quite ready for the work we are doing. We are the cake that would have been so much better with another five minutes in the oven. If you add dyslexia to the equasion, you can really feel up against it.

These days we are used to the ideas of inclusion and disability awareness. Last week I even came past my local primary school and noticed the school sign had a wheelchair using child prominently displayed. It has become the norm, no big deal, to have a child who uses a wheelchair or a walking frame in mainstream school and there would be an outcry if adjustments were not made to accommodate their obviously differing needs, and rightly so.

However, there is one disability that, even in the inclusive atmosphere we see today, often continues to go unrecognised and therefore unsupported. Dyslexia is a condition that has been subject to a great deal of misconception and is much of the time on the margins of educational discourse. We see periodic surges of interest in the condition, debates over causes and even whether it exists at all. Dyslexia is all too often discussed only in the context of academic learning and something that is only relevant to childhood, a problem that disappears with the end of compulsory education.

So what is it like to be dyslexic? In what ways does it affect the individual? It is something that is different for each person. Every dyslexic I have met has their own, sometimes seemingly unique, problem areas. Many have some amazing strengths as well.

When I was a child dyslexia felt like being in my own world. It always felt like I was missing something that was obvious to everyone else. At my best as a child I felt like I was 30 seconds behind the others in the room. In school, classroom activities are structured around how the majority learn. This can lead to the classroom becoming a very bewildering place for dyslexic people. In my life I have seen very intelligent people who are disinterested in learning, have little self worth and feel like they have nothing to offer, purely because the current system at its best puts some of those in it at a disadvantage, and at its worst condemns them to fail from the outset.

Of the multiple diagnoses I have I find physical disability frustrating, depression frightening and dyslexia embarrassing and loaded with social stigma. If I had the choice to remove one of my disabilities dyslexia would be the one I would choose without a second thought. There are some I know that think having dyslexia is a gift giving them creative flair and problem solving skills. For me it was like being in a cage. Before the dyslexic label was applied to me and I got appropriate help I used to think I would die in my own mind. In my more wry moments I have thought that my being dyslexic is living proof that God has a sense of irony. Writing is the one thing I am good at, but I need help to do it. I was having a bad time in hospital a few years ago that resulted in my having a long-term urinary catheter. While it was being fitted, something I had resisted for years, I remarked to the consultant, that if I were to find myself in hell for me it would not be fire or ice I would just be catheterised while simultaneously being made to play scrabble.

Dyslexia with the correct support does not have to be a barrier to achievement. It is not all that you are. Whether you are diagnosed as a child or as an adult, there is help available and improvements can be made at any age. However to enable this, dyslexia has to be recognised as something that affects people across the board, making it not just an issue for educators but one for other walks of life too.

Customer service

I woke up this morning and decided that it was time to come out of hibernation; a state that I have been in for the last few weeks, brought about by Christmas indulgence. Turkey, chocolate and those good old fashioned roast chestnuts have combined to work their spell. I can feel my jeans taking the strain. Inactivity has caught up with me.

I have reached this conclusion after spending the last half an hour trying to convince myself that the jeans I have on were just tight from the wash. I have to concede defeat and admit that, yes, I have definitely expanded!

Christmas is probably the only time of year when I have a prolonged period of complete inactivity – mostly because, in connecting with family and friends, it is inevitable that I spend more time than normal indoors.

It seems to come as a shock to the general population that, as a wheelchair user, I might sometimes be anything other than inactive.

Last year I was in a hospital waiting room and the person next to me asked how I stayed so thin in a wheelchair? I didn’t know whether to be shocked or flattered by this question, I hate the fact that people assume I am inactive. It takes me twice as long to do a basic food shop because I frequently have to stop what I am doing and trek half way round the store to find someone to reach something from a shelf. At the end of this mini marathon, I am invariably seen hanging shopping bags strategically on the back of my chair. In my case three bags are the limit; any more than this and the chair will tip backwards. The result of this is, trust me, not very graceful and in my case was a painful reminder of just why the NHS wheelchair service advises not to put heavy things on the back of your wheelchair.

Over the years I have devised my own methods for carrying those difficult-to carry items that are the impractical to attach to a wheelchair. I can carry bags round my neck, leaving my hands free to propel myself.

My consultant has conjectured that these antics help explain recurring pain, stiffness, and postural problems I am experiencing of late. I have pointed out that I have tried to evolve another pair of hands – but somehow, I don’t think I have the spare time to devote to the process. At college, when I still walked with crutches, I carried folders in my mouth. Sometimes people would walk past me, stick out their hands and yell “Drop!”.

I had to give up this method some years ago to preserve expensive dental work.

I have, of late, experimented with carrying two bunches of carnations between my chin and my chest – which was fine until passers-by stopped and asked if I was ok? Having to respond resulted in losing the tenuous grip I had on my shopping.

In December, I considered designing a sign to wear about my person saying, “Please don’t talk to me, I’m coping”; thereby allaying the fears of the well-meaning, helpful masses who are fully charged with a measure or two of Christmas spirit.

Those good-old “independence skills” I had drilled into me, more than half a lifetime ago, just will not release their tentacle like grip on my psyche. I find myself almost magnetically drawn to “have a go”.

Twenty years of inclusion legislation has supposedly produced an atmosphere that fosters awareness of disability and barriers to participation.

Some weeks ago, I entered an article I had written in a competition. We only filled out the necessary basic information on the forms in my dyslexia support session. Support time was running low and the entry deadline was on the horizon. I was required to make the entry fee payment by BACS, something I had never done before.

I sat in the reception area of the Dyslexia centre and, as I looked at the form, my stubbornness reared its ugly head. Well, it was that or the constant talk of austerity and cuts to services which rekindled my maverick streak.

Cerebral palsy, visual processing problems and visual tracking difficulties were not going to get the better of me. Support worker?; who needs one of those? How hard could this be anyway?

I scanned the form and found a note, “If you have any queries call us on ….”.

When I did so, I was greeted by a very brusque voice. I explained that I wanted the details of where to send the BACS transfer to and the voice continued in a rather exasperated tone, “The email address is on the form” (it was in light grey italics, on white and I had missed it). She then asked if I still wanted the email address and continued by saying, “Send the email “care of the secretary. Everyone can spell secretary can’t they?”

I didn’t have time to argue with her by saying, “Well, in the room I am calling from, the odds are probably stacked against it”.

Am I alone in being depressed that the general public, even ostensibly professional and well-educated ones, even with almost two decades of inclusion built into social policy and even with the modern emphasis on disability awareness, appear to resolutely refuse to truly understand the issues faced by those with disabilities?

Only when this changes will such problems be properly addressed at a grass roots level.

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!!

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?

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.