Tag Archives: support

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.

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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!

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.