Tag Archives: dyslexia

Adversity, Misconception and Disability Chic

A few weeks ago I ventured out to my local cinema to watch ‘The Theory of Everything’. This was the amazing film about the life of professor Stephen Hawking, the world renowned physicist and cosmologist. As well as his intellect he is perhaps, the most well known sufferer of Motor Neurone Disease. He was originally given a life expectancy of two years, however he defied the odds and has survived many decades longer than predicted, making major discoveries and contributions to the word of science and to the layman’s understanding of it.

Growing up when I did role models with disabilities were thin on the ground, the few there were only had connections to sport. I did my fair share of physical activity as a child I swam and was a keen rider having regular sessions with the Riding for the Disabled Association via my school and private lessons at home. It was only recently when researching an academic project that I discovered horse-back therapy, or hippotherapy, is a clinically recognised therapeutic intervention. The name has Greek roots, ‘hippo’ meaning ‘horse’ and ‘therapy’ meaning to ‘treat medically’. My support worker and I had thought it was a spelling error! This therapy has been shown to promote physical development, speech and confidence in individuals with disabilities.

Looking back, I don’t think I aspired to be successful on horseback in any kind of conventional, competitive sense. For for me it was an odd kind of escapism, these activities assumed an almost hedonistic quality. The hours swimming and riding were like a window on another life. I loved that I didn’t look “disabled” when I did them. Just as today I sometimes lie on my bed in an outfit to get an idea of what I would look like standing up and enjoy the appearance of my washboard stomach, only to have it disappear (somewhat depressingly) when I sit up again.

I saw wheelchair sports as negative. I had been raised to believe the wheelchair had too many connotations of ‘laziness’ and ‘giving up’, for it to become part of a leisure activity or a positive tool to allow me to achieve. Society has certainly come a long way in the last 20 years or so, at least I thought it had until I picked up a newspaper and read the story of 12 year old Joe France who was denied entry to the Hawking film because it wasn’t being shown on any of the screens he could access. Ironically, this incident coincided with Disabled Access Day.

It saddens me greatly that situations like this are still impacting on the lives of individuals, a generation after legal measures aimed to make such experiences a thing of the past. This is also following a period in which Motor Neurone Disease has seen a massive increase in public awareness as a result of the ice bucket challenge. For the uninitiated this was a charitable craze that went positively viral, it involved individuals pouring buckets of ice water over themselves with the aim of raising money for Motor Neurone Disease. Participating individuals filmed this activity posting their endeavours on social networking sites such as Facebook and YouTube.

An article in ‘Society Now’ describes the craze as narcissism dressed up as altruism, and questions the motives of those taking part and the effect of these crazes on societal giving. They point out that when one cause is in vogue others lose out by default, not just in the financial sense but in the social sense as some causes cannot hope to capture the public’s imagination. Dyslexia is one, as is the needs of adults with Cerebral Palsy; we are not cuddly, sweet or life-limited. We struggle on with all the appeal of an elderly dog in a shelter waiting and hoping for someone to notice we are there.

For me the solution is to adopt the US attitude towards disability, to celebrate it and support the individual more. We are not all in the position of Stephen Hawking with supportive parents, wife and close friends; neither do we all have his intellect. Most of us are average people whose ambition is to go through life with a family, work and leisure activities. For this to be achieved the basics need to be in place…. accessible public transport, flexible working hours and a flexible benefits system that does not penalise for trying to gain paid work. Here’s to progress.

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Dyslexia Awareness Week

Last weekend I started reading Footfalls in Memory, a book written by Terry Waite. Waite travelled to the Lebanon in 1987 as a Church of England representative in an attempt to secure the freedom of four hostages, one of whom was the journalist John McCarthy.

In the opening paragraphs he discusses the things he most missed while in captivity; outside the obvious human comforts top of his list was reading and a good supply of books. In his 1,760 days in captivity he longed for, dreamt of, begged and prayed for books. He relished the few that were brought to him by his captors and dredged his brain to relive the books of his youth. One night he was dreaming particularly vividly of his study and bookshelf within it when he was pulled from his dream by the shackles on his legs.

His recounting of this experience struck a cord with me. Like Terry Waite I too have a lifelong love of books but have known what it is to live with the deprivation of them. I was not of course a captive in the same sense, I was a prisoner of my own neurology. Dyslexia was my jailer, in addition to cerebral palsy. Dyslexia and significant neurological visual processing problems were the biggest cause of my distress. People could grasp my physical limitations well, because of course there were some very obvious visual clues. Believe me, I could never have blended into the background in any room, my movements resembled a Thunderbird puppet after an impressive night on the tiles, this helped people accommodate my difficulties. The hidden disability is, I have discovered, a entirely different ball game. It brings with it embarrassment and the constant need for justification.

Dyslexia is a condition that is subject to much misconception. It has spent many years on the margins of educational discourse. From the outset, it has not been taken seriously as an issue, with those affected suffering educationally as a result. Dyslexic people have often failed to achieve their full potential, with little interest taken in their condition. Dyslexia is often overlooked and mislabelled as: nobody is expected to be good at everything; laziness; stupidity on the part of the individual.

There has however, in recent years, been a surge of interest in the condition. There is growing awareness in schools of the problems faced by dyslexic children in the classroom environment and of the different ways by which people learn and process information.The problems caused by dyslexia are all too often situated and discussed only in the context of academic learning, as something that is only relevant to childhood and a problem that disappears with the end of one’s compulsory education.

So, what is it like to be dyslexic? In what ways does it impact on the individual? It is, I think, a different experience for each person. Every dyslexic I have met has had slightly different problems, seemingly all related to reading, writing and spelling but manifesting themselves in slightly different ways. Each person has different strengths and weaknesses.

For me, to have dyslexia has, for much of the time, felt like living in my own world. Text feels almost like a second language and led to me spending years feeling out of my depth in the school dominated world of childhood. For a dyslexic, the classroom is often a place where you can feel left behind, particularly if the problem remains undiagnosed and unaddressed.

In school, teaching is structured to suit the majority of children, who are not dyslexic. This can create a situation whereby children lose interest in the learning process, which can ultimately impact upon the rest of their lives.

Some have described dyslexia as a “gift”. I have, in my life met some extremely talented dyslexic people, many of whom tell me they would not be without it. They think it has made them more creative, it is truly a part of the people they have become.

I struggle to think of my own dyslexia as a “gift”; being a writer, I resent its presence. Maybe my dyslexia has given me something to strive against. Often I have thought my existence is proof that God has a spectacular sense of irony or a good sense of humour; dyslexia has helped me develop both of these traits. Like a lot of dyslexics I know, I am told I am a good lateral thinker. Unlike many of my dyslexic counterparts, I am not a good kinaesthetic learner; this may be because my dyslexia is complicated by cerebral palsy. I have searched hard to find the “gift” my dyslexia has created, but have yet to find it.

I love to write and to read, neither of which I achieved in an entirely conventional way. I still remember fondly the arrival of my first Talking Book player aged 7 or 8, a metal box with a lever control for play and rewind, track change, tone and volume. It was heaven help you if you fell asleep as to relocate your lost place would take a long time as they were all on tape; you would have to listen to the oral tape markers that contained letters and numbers to try to find it again. Sometimes now when I can’t drift off to sleep I catch myself counting N10, N9, N8, way more effective than sheep for sleep. The first player I had looked like a cross between a reel to reel player and a Dalek from Dr Who. I still remember the twinge of excitement I felt when the old tape cartridges dropped through the letter box. If I could manage it I would sneak off to my room for a quick five minute listen, the taste of which could keep me going through the darkest of school days. A true comfort and the best of all my friends. I firmly believe that access to Talking Books saved my life. They reminded me I could learn and were the beginnings of my true education.

Technology has moved on and although I would not be without my computer, I am still reliant on the help of other people, who work hard to ensure articles I write conform to the laws of the English language; helping others to understand precisely what it is I am trying to say. I access support from the Dyslexia Association of Staffordshire. Although I am able to read text, it is easier for me to retain the information I hear, so I prefer audio books of which thankfully, there is an ever increasing selection. The advent of Mp3 players and Podcasts, have also helped me to access information in a way that works for me.

I often think about how my life would have been different, had I benefited from early diagnosis of dyslexia and appropriate teaching. When you are diagnosed as an adult or in late adolescence as I was, it is a struggle. You carry with you a lot of negativity about intelligence and your ability to learn and achieve. I was lucky in the end, after leaving special education for a mainstream placement my problems were re-evaluated and addressed. I was surrounded by teachers who did not perceive dyslexia as a dead end problem. It was never allowed to be a barrier to achievement or a negative label; it was something to be worked on and around.

Dyslexia, with the right help, does not have to define who you are. Whether you are diagnosed as a child or as an adult, improvements can be made at any age. For this to happen, dyslexia has to be considered as something that affects people across the board. It is not just an issue for educators but a fact of life.

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

Rising to the Challenge

I am flying solo this week. Louise my assistant, who provides my academic support, is as I write Stateside and hopefully having a good and well deserved holiday in the sun.

It has been an interesting week all round in terms of my support needs as my parents, the usual provider of my daily support, have been on a trip to Italy. My Auntie Sue and my mum’s friend Maureen stepped in to fill the gap. With all of the absences, I decided to take the opportunity and set myself a little challenge; this blog post is brought to you via voice recognition technology which is something I have dipped in and out of over the years, with varying levels of success. I put on the headset, stare at the screen and many times my head goes blank. I think this has more than a little to do with my school experiences, allowing me to dictate work was considered somehow as giving in and allowing me to be lazy. For my generation of people with disabilities, aids in whatever form were to be used as a matter of last resort, and something to aspire to be without.

I have found that it is a completely different experience compiling something in your head and dictating it onto the page, than it is to type manually. I always feel somehow disconnected from the process; it never seems to flow as well. I like the tactile element of crafting something and if that gets lost, I end up having to concentrate so much on the act of talking that I lose the thread of what I am trying to say.

I have casual conversations in person quite easily, but if I have to think hard, or repeat myself, my body and brain get all scrambled and a word will suddenly decide to stay in the “no mans land” that exists between my brain and my mouth. This gets very interesting when having a conversation with my Dad who has a significant level of hearing loss and misses part of what I say to him. At some points it feels like I am in the middle of a neurological war of attrition, with Dad’s responses usually along the lines of, “What, what did you say?”, “Can you repeat that?”, “Say again.”

The whole process of dictating also feels far more public. I used to have a horror of doing my university exams in this way. I remember on one occasion as always, I was separated from the other students. Myself, my support worker and the Invigilator were in a room, a grand looking affair with an oak table. As I took my place next to my support worker scribe, the Invigilator remarked that I looked pregnant with thought. What was really going through my head was, “Oh My God! He is going to hear my answer and judge its worth and mine by default.” a pressure my pen- wielding peers didn’t have, they got a pass or a fail in private.

For me, disability means that concepts like privacy, independence and personal choice are a negotiated, sometimes “grey” area. I get exited about software that promises this freedom, however nothing has been created that gives me this autonomy so far. The IPad has proven to be the biggest leap forward so far. I can access ebooks, talking books, notes and papers on something I can carry around in a small bag.

Like most writers, the things I write about come out of my own life experience, the difference is I never get to write alone in a cafe, in one of those moleskin notebooks so beloved of my writing friends. Well, I could give it a go but there is a good chance that when I came to look at it again, I wouldn’t be able to work out what I had been trying to say! Sometimes I wonder if in the future my notebooks will be unearthed by a social historian, or end up on some kind of documentary like the ones you see on BBC2 about the evolution of the written word. I never complete the process of writing alone, in fact in my case the act of writing can give me a story to tell.

A few months ago while planning an art journal page I came across the quote by the author Neil Marcus, “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’ Disability is an art. It’s an ingenious way to live.” For me, this sums up my own views of my life as a disabled person.

 

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!!

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.

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.