“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.


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!

From The Sublime to the Ridiculous

From the Sublime to the Ridiculous

This blog post is brought to you courtesy of 2 iPads, an iPhone and 2 add-on keyboards.

Well, where do I start? Possibly with my so called support worker blaspheming about the 2nd keyboard I’ve dug out of my bag this morning. Yes, that’s right folks I have 2 of them! My trusty iPad 2 3G state of the art about 4.5 years ago, recently joined by the iPad Mini, (mostly because it has Siri, Apple’s voice recognition software that is built into the iPad’s operating system) aimed to reduce my reliance on fellow human beings. This is all very well in theory, until you find yourself in a technological void and the batteries have gone in the 1st of your ‘qwerty’ keyboards. Such is my life. Parts of each appliance works, but no singular tool will complete a task for me.

This situation prompted several memories of similar technological faux pas. Some months ago I attended the British Sociological Association’s (BSA) annual conference in the lovely surroundings of Glasgow Caledonian University. This involved a mammoth train journey, the usual pre-booking of assistance a week in advance and the finding of an accessible hotel room, all of which was going swimmingly until I found my way to the taxi rank. A very pleasant man asked if I could get out of my chair and into his taxi, to which I responded, “No, I need the ramp.” It is worth pointing out here that there was a beautiful fleet of white hackney carriages, relative bliss compared to where I live. The man dutifully got out with a perplexed look on his face brandishing a large key to open up the floor to unfold the ramp. He had never done this before and I was developing a sense of impending doom as he couldn’t do it now.

The ramp made an unhealthy, creaking noise sounding rather like a badly worn, octogenarian hip joint. The result had a definite contracture in the middle of it that should not have been there. The whole car looked as supple as me on a good day. He was able to manhandle me up this undulating ramp into the back of his vehicle, then came the need to fold the ramp back up into the floor. Well that just was not happening. I suggested he wedged of the 3 sections against my wheel, so he could shut his door and take me to my destination. Having got in there, I was not about to give up.

We did this and I arrived at my hotel in 1 piece. He unloaded me in the same, ungainly manner and I left him to the problem of folding his ramp back up into 3 and into the floor. I was sitting in the hotel reception, when I heard banging followed by a string of expletives. Rather embarrassed, I said to the receptionist and queue at large, “Terribly sorry, I seem to have broken his car.”

However, this was all nothing compared to what I had to do to get into my support worker’s grass-green, 3 door, Vauxhall Corsa. To embark on a journey in this vehicle I would stand, bodily hanging over the passenger door whilst my colleague folded my chair and slotted it behind the seats, I would then sit in the seat, bring my knees up to my chest, while my support worker lifted my feet into the car (sometimes having to force the issue a little). Once the seatbelt was on, I was comfortably situated with my knees rammed against the dashboard and my nose practically on the windscreen. On reaching our destination, the above description was applied in reverse. This was done on a weekly basis for around 4 years; ‘needs must when the devil drives’ and drive me he did! In fact, I think this qualified as suffering for one’s art.

I got into my university library this week in the most unique manner possible. There is something about universities where, at the end of term, they become building sites. At least ours does anyway. Every year around this time I begin to get a feeling of dread; my well-practiced routines will inevitably be disrupted by this maintenance work. This time my usual place of study is being renovated to become a teaching area, gone are the comfy sofas, coffee lounge and TV with rolling news. For years my only access to the news as it happened was in this coffee lounge. I have had to find a new haunt.

There are tables and a reading area in the library itself, no cups of tea and cake, but you can’t have everything. Disaster struck this week when I arrived to find a group of workmen busily digging up the tarmac and roping off my usual entrance with tape. Ever intrepid I found the side door and made my way to the lift that allows you to access the main counter; I found it, presenting in the 1st floor position i.e. above my head, with the buttons flashing different coloured lights. I have to say, more in hope than expectation, I depressed the button that should make the lift descend, no response. I prodded a few other buttons just for good measure, then asked a passing member of staff what to do. “Does it have a plug you can turn on and off?” I asked, thinking of the many times my digital TV box had done a similar thing. We found a switch, but nothing seemed to change except perhaps the noise it was making became subtlely different. Ever helpful n the face of my adversity, a staff member went to ring the maintenance department, apparently to turn it on and off required a special key. I sloped off for a cup of tea while he and the key were found and put to use.

Anyway as I said at the beginning, this post may have taken 5 appliances to produce along with a good old dollop of ingenuity, but we got there in the end. What can I say? The world loves a trier. We just have to make this thing go live now, see you in a day or two.

History, Inequality and Activism. Political Meaning in the 21st Century

1981 was designated the International Year of Disabled Persons. The international community called for a plan of action for change at every level international, national and local. This was possibly the first acknowledgement of the discrimination and inequality faced by those with disabilities throughout the world.

The aim of the year was to promote equality of opportunity for people affected by disability. On a personal level I don’t know if anything much changed in terms of how the able population thought about, and reacted to, the presence of disability and the people affected by it. I was a child and my condition was newly diagnosed.

Looking back now at the more than 30 years that have elapsed since then, we can see that it was far from a great watershed with regards to prejudice and discrimination that one might have expected it to be. It did, I am sure, raise awareness of disabled people and their needs on some level, but little really changed. It was as if a group of politicians woke up one morning and said, “Oh yes, disabled people. Let’s tell the rest of the world they exist.” and the rest of the world responded by saying, “Thanks for the information, but what do you want us to do about it?” It took another 14 years for significant anti-disability discrimination legislation to make it onto the statute book. Until this time it was perfectly legal and acceptable practice for shops not to have wheelchair access, for cinemas and theatres not to allow disabled people entry as they could be deemed a fire risk, or to be forced to travel in a cold, guard’s van when on a train, something I did on several occasions as a child.

To be honest at the time it never struck me as wrong or in any way a bad thing, it was just the way it was. It was only when I travelled to the United States with my family that I began to understand the concept of disability rights e.g. universal access to buildings. Here it seemed it was radically different. I could board a train or a bus on which there were designated spaces for wheelchair users. Here I was able to travel like a citizen and not as someone else’s luggage. It was the kind of socially aware design that we are only just beginning to see in the UK.

It has now been 20 years since the Disability Discrimination Act came into force in Great Britain. The Act aimed to provide legal protection and redress for individuals living with disability. Like me, many of you will remember those bad old days of segregation, when disabled people were sent to separate schools and social clubs. We lived parallel to the rest of the social world, side-by-side with our community, but were never allowed to be properly part of it. Just as women in the 19th and early 20th century were left politically mute, without the means to vote.

There is now a whole generation of children and young people who have grown up post discrimination legislation who have an expectation of inclusion. Things are very different today, we have become people with disabilities, we are given choices and we have more of a say in our lives.

So, as people with disabilities can we look back at our history and say, “Job done.”? I was attending a meeting of students with disabilities and was blown away by how assertive they were. One student was even complaining that she had to use a different door to her non-disabled friends, something that she found utterly unacceptable. In my day, I was just grateful to get in the building. Oh, how far we have come.

There are however some niggly, remaining issues particularly locally where I live. Wheelchair accessible taxis are tacitly allowed to charge wheelchair users twice the price of a standard taxi for the same journey.

See story link.


At my doctor’s surgery recently I encountered a young girl with significant disability, very sparky who told me she liked to get out and about. However that week she had 2 doctor’s appointments, meaning transport to them had reduced her budget to be able to do other activities. Perhaps on a more positive note I was pleased to be watching BBC News, who ran a piece on Sarah Sobka a young woman with Cystic Fibrosis who had won a national Science prize. It was nice to see a good news story and not a story about benefits and cut-backs.

See story link


Whilst much has been achieved in relation to disability rights and social inclusion, it is I think unwise to take our eye off the ball. We are, like every other social struggle, only half way towards a solution. In 1928 women were granted the universal right to vote, something that had taken many years of campaigning to accomplish. Many activists suffered long periods of imprisonment and were subjected to humiliating forced-feeding, some even lost their lives. When I was 18 I went to the local polling station to cast my vote as a woman, to have my say. This too is an election year however, many people have descended into apathy, they do not vote, as of course rights also come with the right not to do something. Not every woman is a suffragette and not every disabled person is an activist attending meetings, you don’t have to be.

The fact is that every person with a disability is different, we all have different needs, wants and desires. We live in a time of increased economic austerity. Disabled people can very easily have their services cut as we are an easy target group, many of us need the very support that is being cut to make our voices heard.

To get us back on the political agenda we need as a group to become more vocal once again. Go along to MP surgeries and challenge the political stereotype that has developed i.e. workers versus shirkers; portray ourselves as a group with a considerable number of votes. When politicians speak about social issues they often forget to speak not only about us, but directly to us as well.

Economic Predictions of a False Economy!

A few years ago my mum and I were sitting in a hospital waiting room, a situation not uncommon for either of us. Chatting as you do to relieve the monotony we began to wonder just how much of our lives we had spent in this situation. My mum, ever the whizz with number crunching, began this complex calculation. The end result equated to about 12 months as an inpatient at various hospitals and 5 years if you counted outpatient appointments and all other disability related meetings.

The amount of time spend waiting of things got so ridiculous at one point that I considered sending a petition to God for a refund on the bits of my life I had spent in health and social care transit. That is the thing when you have a disability in tow, everything takes twice as long. I have a friend who used to say that having a disability was akin to the scenario of having your first child, it changes life as you know it (something my brother will undoubtedly agree with having had his first child earlier this month).

Change is in the air for all of us. I decided it was time to sort out my own needs that previously had been so deftly met by my late mother. To this end I got myself a social worker; well technically my district nurse did, apparently these services are integrated. I waited a week or so and heard from one of the adult social care workers who made an appointment to see me at my house. We had a discussion about my needs, lifestyle and sources of appropriate support.

The social care landscape has changed significantly over the course of the last 5 years, now many social services departments across the country only provide for individuals who meet the critical and severe category. This leaves a substantial number of people in a black hole; there are those of us that don’t require intense levels of care but we do need ongoing support and care to prevent deterioration to the point where we do require more significant intervention. For example, I require the application of regular emollients and assistance to wash my feet and legs, this prevents skin breakdown, risk of infection and ulceration. However, because I want to continue to try and maintain my independence and only have outside assistance with this particular task, there is seemingly no criteria I meet that would initiate statutory provision.

I have been told to source the support privately, which I am happy to do. This has created a very interesting dilemma, finding an organisation that provides this service, covers my geographical area and is willing to come out for 2 calls per week of half an hour duration is like searching for gold at the end of a rainbow. I have never had this experience in any other walk of life. I cannot imagine walking in to a shop and trying to spend money, only to be turned away. It does seem financially sensible and it certainly in my opinion lacks good business sense.

The best I seem to be able to do currently is sit on a waiting list and wait for new arrivals to one care agency to be trained up in about 6 weeks or so. This process has made me realise just what a precarious situation I am now in. Support available would seem to make it almost inevitable that my situation will deteriorate to a critical point, where I will need costly, intense support and possibly hospitalisation. This has got to be a false economy in every possible sense.

Irony and Assistance 

I have always said that as a dyslexic writer I am proof that God has a sense of irony. I was reminded of this last week when my nephew, Hamish, decided it was time to come into the world, This was on the same day that our family said our final goodbyes to my mum, following a long battle with cancer.  In the same week I received a text message from my dad saying, “I am in hospital. Don’t worry I have had a TIA (transient ischemic attack) and am waiting to see the stroke bloke. I feel as fit as a fiddle now though.”

That text sent about a gallon of ice-water down my spine and into my scull and I felt as though my brain had frozen in some kind of ultimate brain freeze. The past 12 months have been a great life lesson in the different workings of the male and female brain. I cannot for example think of a scenario where my mum would have broken such worrying news via text, then spend the following two hours being incommunicado by any modern means at my disposal. My local hospital is something of a grave yard when it comes to phone signal, so is my brother’s house but we will get to that later.
The TIA has meant that my dad is now unable to drive, to put this in context he lives in a comparatively rural area some 5 miles away from me and just for the record, I cannot drive either. I have not inconsiderable levels of support need, usually serviced by my dad arriving at intervals in his trusty Volvo to clean the house, change my bedding and take the ironing away to be done. The absence of motorised transportation has made life very interesting. My dad, the avid walker and adventurer, has now taken to to donning a rucksack filled with ironing to be done and taking it home.
This time last week we decided that we would go and see our new arrival, train tickets were duly booked as was the necessary boarding assistance for the rail travel. We turned up at our local station where I was greeted warmly. I do rail travel quite a lot and the station staff know me quite well; a definite advantage when travelling with a disability and normally alone. This was going to be a relative treat as I had my own onboard, physically able assistant.
We arrived at my brother’s house to discover that the camping bench he had ordered as an improvised shower seat had failed to arrive. Apparently for some unknown reason it had not yet despatched though we were assured that it would definitely arrive the next day. I could not get irate about the absence as I was too excited to meet Hamish.
When I met him, he was perfect. After this we went back to my brother’s newly finished house, a converted water-mill. Bedrooms were on the 2nd floor, the ground floor accessible rooms still have work to be completed so it was down to being carried up and down stairs by my younger sibling. I made him go a bit red in the face, so reverted to the soft-bum shuffle ably assisted by Pumba, the family Springer Spaniel. When I was at the bottom of the stairs I discovered that I had no mobile phone signal in order summon assistance to bring my wheelchair downstairs. Shouting was pointless as my father is hard of hearing. I hit on what I thought was a splendid idea and told Pumba to, “Go and fetch Grandad.” She dutifully obeyed. However, Grandad didn’t take the cue and thought Pumba had just come to play.
This led me to think about assistance dogs, and whether it was time for me to have one. I realised how useful it would be and it was comforting that Pumba would not leave me alone and sat by me until my dad finally came. Very reassuring. I began thinking about this instinctive bond between man and canine and discovered the idea of using dogs in this manner wasn’t new. The most well known use is as guide dogs for blind people which was first tried in Paris in 1780 when Josef Riesinger trained his Spitz to guide him. Johann Klein, from the Bling Institute in Vienna, mentioned guide dogs in his books of 1819 and the first guide dog school was opened in Oldenburg, Germany in 1916 to train dogs to assist war veterans.

Pumba providing encuragemeant half way down
I have one friend with a Canine Partners’ Dog. Canine Partners are a charity that provide assistance dogs for people with disabilities. Faye has found Odile a massive positive in her life, giving her confidence,companionship and physical assistance with tasks like getting the TV remote.

Faye and Odile
From my point of view I have always found dogs to be far more perceptive than humans, seeming instinctively to know when you are sad, distressed or happy; they are not self-conscious and will quite naturally come up to you and nuzzle you as if to say, “I am here, you are not alone.”


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.

Going Retro

This week I’ve been immersed in activities that I thought were well and truly relics of my past life. What, you ask, has prompted this backward step?My almost nephew will be turning five in a month, and thinking about this caused me to have a crisis at the passage of time.

Alexander has now overtaken me in many areas, and I witness regular, effortless, neurological development that many times alternately astounds me to tears of joy. For over a year he has been able to do jigsaws with over 100 pieces which I, with my visual issues could not do at his age, or even now. I am having a good day if I cope with something that says age 3 plus, though I never saw the point of putting the thing together in the first place. For me, it was a torturous activity far too resemblant of physio or occupational therapy to make it it to a pleasurable pastime.

I like to get useful, mostly educational type gifts. When at Christmas, Alexander sat next to me reading what I think was the ladybird book of the Christmas story, I looked on in wonder as he read aloud the entire book complete with the back cover that said it was suitable for toddlers. I had to point out that it wasn’t referring to the person doing the reading. Just as I marvelled at how easily he learned to walk, I was floored by the ease and fluidity of his reading and was overcome with utter relief for him that he will be able to experience other worlds, learn facts and express more than I would have been able to do at the same age. I like to share the books of my childhood with him, in turn recapturing my lost youth, or perhaps more accurately my inner child.
It was to this end that on Sunday I found myself purchasing an audio book of ‘A Bear Called Paddington’, by Michael Bond. For the uninitiated Paddington is a small bear from ‘Darkest Peru’. He is sent to England by his aunt Lucy after she moves to a residential home for retired bears. He somehow finds himself on a railway station platform, is found by the Brown family wearing a label saying, ‘Please look after this bear’ and in the logic and kindness that seems only to exist in children’s stories, they do just that. No questions asked.

Paddington has a very literal thought process, gets into scrapes and has adventures. He also seems to have a negligible ability to spell, which endears him further to me. Sometimes I think he is me in bear form, he certainly seems to have as many obscure adventures.

I swore that, after my previous experience with emergency call buttons, hell would freeze over before I had one again. Well, it’s chilly outside and after having found myself stuck on a bedroom floor, discovering why dogs don’t like laminate, as you cannot get a purchase on it, I have had to relent.

I was most impressed that the Social Worker managed to get this sorted out within a week and a half, even taking into account Christmas break. I had a phone call telling me that an installation operative would be calling to fit me with the necessary kit. He came at the appointed time and began demonstrating the equipment. When installing the box he had to move my ornamental Bilbo Baggins, made for me by my dad’s artist friend. In this I discovered a kindred spirit and while he was working we had a lovely conversation about Tolkien.

When he had finished he got me to have a test run, I pressed the pendant button and a reassuring, automated voice told me not to worry, that I would be connected shortly. The test run went well and the responders on the end of the phone seemed to really be aware of the need for their service. A far cry from my last experience, about 10 years ago.

It is heartening to discover that even in a climate of cutbacks and closures of services, positive progress has been made. I now feel much safer, as a result this has made me more independent. Strangely, it has also made me feel more youthful as I know I will be able to sort out a problem without relying on family support. I feel positively retro in all senses.

Meaning and Metaphor: Dispatches from the Front Line of an Illness and Disability

I have to confess to being somewhat neglectful in my blog posting of late. The truth of the matter is that having a close family member with cancer for a while became all consuming, our family has had its normal rhythm disrupted. Several weeks ago I came across an article in The Times about the different metaphors we use to describe illness. These it seemed were most often to do with war. I think for the individual affected by serious illness the war metaphors can become both descriptive and prescriptive, many people have described my mum as tough and a fighter. Both are true of her and in many ways appropriate as she attacks life in general with a type of military precision I have found nowhere else in civilian life. I believe it was Christopher Hitchens objected to this type of description, he felt that cancer was attacking him, not that he was battling the disease. I suppose having a positive mental attitude can improve your quality of life, but I am not sure how much impact it has on the progression of the disease.

Spending a lifetime living in this order and routine I now feel adrift, when cancer a strongly disruptive force unexpectedly landed in my wider family life. The strangest thing was that many things carried on as normal. Cancer is a word that makes you stop and take an involuntary deep breath, the surprise comes when you breath out and and find that all other aspects of life are the same, life it seems still happens. The paperwork generated by my disability, normally so deftly filed by my mother has piled up meaning that my once ascetically pleasing work top has all but become engulfed. For several weeks I felt like I was camping out in my own life, just as when you are on holiday, you get to the hotel, live out of suitcases and experience and do things you would not normally do, so to with the wider family experience of illness.

My life has been ordered and routinised by virtue of the assistance I require in order to live. Every day of my life has its own structure, different activity and mini plan. Cancer has disrupted things on every level. So used to being the subject of medical intervention myself it felt like an odd kind of out of body experience to watch it from another perspective. People are always telling me how much I sound like my mum, now I catch myself thinking she sounds like me. She uses medical lingo like a pro and would rival some of my friends from my special school days, comfortably using terms like PIC line and spiking a temperature. For all my adult life my mum has served me well as a clothing mannequin, while shopping she would try outfits against her body to see if the trousers would be too short as we are the same height. I never thought this role would reverse in the form of the loan of my spare wheelchair and pressure relief cushion, the latter becoming necessary because of a serious reduction in body mass.

We have a deeper and in some way better understanding of each other, perhaps that can only come via a shared experience. I have learned to be less idealistic and judgmental of those who make choices for loved ones based on the information given at the time, and we both know well that medicine can be both miraculous and cruel, tearing to the depths of ones soul on both counts.

Recently I was struck by media reaction to statistics that indicated that over 50 percent of woman and 43 percent of man took a drug that was prescribed to them, most “popular” were pain killers, cholesterol medication and antidepressants. The inference being that we could do without these if we just shaped up and pulled ourselves together. It saddens me greatly that even in the 21st Century it can be inferred that to experience mental ill-heath is a negative lifestyle choice that should be discouraged. Yes such drugs are costly, but like treatments for cancer and heart disease they save many lives and improve the quality of those lives.

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.

Only When I Laugh

A few weeks ago I was reading The Times Newspaper’s ‘Spinal Column’, a regular feature written by the columnist Melanie Reid who became quadriplegic a few years ago following a horse riding accident. Her column has provided a much needed window into the disability experience. It is raw at times; written in the moment. Melanie shares with we readers the ups, downs, farcity and at times utter hilarity of life with disability.

I was surprised and saddened when she related that some readers thought she was making light of the problems people with disabilities face. Personally I have always been a great believer in the power of laughter. The ability to laugh at myself has been a saving grace in the last ten years, it has helped me to deal with unimaginable loss. It has saved me from becoming a moaner, I can discuss my problems and not feel weighed down by them. People think I am eccentric when, for example, I say that I have become convinced that my garden shed has a contract out on my life as bits of its construction seem to keep wedging themselves under my wheels at the most inconvenient times.

For me, humour is a way of deflecting my mind from my personal vulnerability, the precarious nature of the limited independence I have. The last few months have given me precious little to laugh about apart from 2 things: our family have now developed a communal sock fund; men see wardrobes very differently to women.

First the communal sock fund, because I have very swollen feet I have to wear men’s size 8 to 10 socks. This is, coincidentally, the same size worn by my dad. He has now taken over laundry duty with the result that recently we discovered we were in fact wearing each other’s socks, as they had somehow got swapped in the process of him doing the laundry at his house and returning it to me.

Secondly, men and wardrobes. My dad has developed a hatred for plastic coat hangers, as he says there are too many of them in my wardrobe and they take up too much space. He also struggles to tell the difference between nighties and dresses, pyjamas and leggings. This makes it really interesting when I come to get dressed each morning and reach into my wardrobe. He did help me the other day when I tried 3 times to fasten a shirt up, got frustrated as I was always left with a button at the bottom and he explained that it was the spare button.

If we both stopped to think about why these things were actually happening we would probably end up in the deepest of depression. However, the ability to laugh in the face of adversity has, to this point, saved us from that.

This week I came across a quote by Robert Kennedy that summed up how I feel about dealing with sadness and adversity, “Tragedy is a tool for the living to gain wisdom, not a guide by which to live.”