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“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.

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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.

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.

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.”

Too Much of a Bad Thing

One Sunday night about 18 months ago there was a knock at my door, I opened it to be greeted by a smartly dressed young man. He proffered his badge and informed me he was working to collect donations for a cancer charity. He gave me a statistic that one in three people will be affected by cancer during their lifetime and went on to ask if I would like to donate money regularly to fund research into cancer and its treatments. I responded that I would give money regularly to cancer charities when neurological disability such as cerebral palsy got the same level of publicity and financial backing.

I have to confess, it had been a bad day. I was coming to the end of my battle with Social Services to obtain support to enhance my quality of life, give me a purpose and help me achieve some life goals. Whatever I did, I felt like I was falling through the cracks. I felt very vulnerable with only family members and a bit of private support I was able to fund with my Disability Living Allowance. It exasperated me that people grasped the need to provide good support services and treatment for cancer but seemed to be blind to my situation.

However, three months ago now my political stance regarding cancer charities came back to haunt me in the very worst possible way. My mum, who had been ill for some months, was finally diagnosed with a rare form of cancer. You see the adverts on TV of people falling backwards having been hit by the tsunami of their diagnosis, that’s exactly what it was like. Cancer has always been in the background, like the mist and fog which comes with the onset of winter. The women in my family carry the predisposition to develop breast cancer, lumps, bumps and breast changes all of which were openly discussed. I was almost blasé, when my mum told me that a breast biopsy had revealed a high risk of malignancy and she had decided to undergo a mastectomy.

I have to say mum sailed through the whole thing; applying the same logic and fortitude to her recovery as in the past she had to my physiotherapy, that good old ‘no pain no gain’ ethos. Within a month she was back to helping me with physical tasks and even lifting my wheelchair in and out of the boot of the car, not medically recommended. I have to confess to breathing a sigh of relief as the risk, in my eyes, was gone and the panic was over.

Two things are interesting about the current situation: one, the cancer was a type that was entirely unexpected and two, the diagnosis has led to some odd conversations with my mum. For example, immediately after announcing that she had cancer she told me not to worry as my dad would be able to epilate my legs. This was the first of my personal care issues that she reassured me that dad was going to learn to support me with. I find it fascinating that of all the things she could worry about, leg hair was a priority.

I have now found myself judging mum’s health and wellbeing by whether or not she comments on my posture. Historically she has been like a human spirit level when it comes to how I sit and stand, whether my clothes are on straight and if my trousers need pulling up. When she has been really poorly, this level of awareness disappeared and I thought I would find it restful, but found that I do not. I have resolved never to internally whinge about this ever again.

Similarly, now dad has taken over many of the household chores he has begun to apply his engineering training and logic to various scenarios. He has a complex spreadsheet to help him organise the weekly food shopping, column headings are: item; need it; got it. Despite this he managed to forget the milk recently as they fell off the end of his sheet. Interestingly, mum has noticed that the food bill has inexplicably gone up.

Mum has developed more of an understanding of the necessity for television, the lack of which created a 2 day stand off when she was allocated the 1 bed in hospital where the TV did not work. She had been in there for 7 weeks and felt isolated from the outside world. It proved to me that the little things really do matter.

Once someone close to you has this diagnosis, you feel that it is everywhere. Dad and I went to the canteen at the hospital and the lady at the till asked if she could interest us in a cancer awareness badge, I told dad that I thought we were aware enough of cancer without the need for a physical reminder.

Dad’s car previously used to be an engineer’s mobile office and now routinely carries 2 wheelchairs. It has begun to resemble a patient transport ambulance. Dad is now becoming as conversant with the lingo of hospital as mum and me and has to work out what to do when both mum and I have a hospital simultaneously, which has happened more than once.

Dads are much less tolerant of NHS idiosyncrasies, he will ask the question, “Why is that desk so high?” and “Why are all the bins in this hospital foot operated when half the people in here lack the use of their lower limbs?” Compare this with mum’s perspective that yes, in an ideal world there would be a low counter but we have more pressing issues so, we have to pick our battles wisely.

The transition of moving from mum’s care to my dad’s is taking some adjustment for me. Dad and I are not so polished as my mum but, like many British institutions, we get there in the end.

The Rules of this Sociologist’s Method

Last month saw the start of a new school year. All over the country there were transitions occurring, there were children commencing their primary school education, some were moving from primary to secondary school and others from school to college or university.

The last two decades have seen the increasing commodification of the education system. Newspaper articles are now full of comments about parental choice, school league tables and problems related to catchment areas. There have even been stories in the media about parents moving and converting to a particular religion, in order to obtain a place for their children in the school of their choice.

This was a far cry from my family’s experience with me. A few years ago I had an attack of curiosity about my early life, my diagnosis and how it had shaped the person I had become; I ordered a copy of my medical notes from birth to 5 years of age, I have to say that it made very interesting reading. I opened up the folder and discovered what read like an episode of Casualty, and yes, they really do write things like, ‘Crash called.’ I was quite surprised to discover that I had had an entire day with no breathing problems at all and that the crashes only started on my second day of life.

I was resuscitated a scary number of times, to that end I am amazed that I am only this brain damaged. Almost 2 years later I was eventually diagnosed with cerebral palsy, coming after a ridiculous battery of tests, the paediatrican insisted on ruling out other conditions, metabolic in nature. This fascinates me as Theodore Woodward, Professor at the Maryland School of Medicine in the 1940s once said , ‘If you hear hoof-beats, think horses not zebras.’ and cerebral palsy is most definitely the horse associated with premature birth and oxygen starvation.

A little over 12 months after my diagnosis my parents were told that it would be best for me to attend the local special school. There was no particular discussion about any other options and obeying medical advice meant you were perceived as a good parent wanting the best for your child. I have friends whose parents questioned advice, or who didn’t follow it and they were talked to as if they were failing in some way. It seemed aspirations had to be kept realistic. My mum once told me about a conversation she had with my then headmaster, he related a story about a pupil who had expressed a desire to become a professional footballer when he was older. The headmaster thought that to collude in such a dream was to be ultimately cruel. However, I can’t help but think that this was a very black and white view, after all there are many children who express desires to become astronauts, nurses, train drivers, etc and who never ultimately become these. These childhood dreams are a way that we explore possibilities and parts of our personalities. To rob a child of this was I think equally as cruel.

When I became an undergraduate sociologist and began learning about Emile Durkheim, I was struck by his idea of using deviance as a form of social measurement. The use of ‘deviance’ to construct ‘the good parent’ was a prominent feature when I was younger; names of parents who did not conform with medical advice would be “hinted” at in conversations between staff, both teaching and medical. The progress of us children would be compared. I for example had a heel strike, this seemed to be a comparatively rare, but desirable phenomenon, most of my fellows walked up on their toes due to tight hamstrings. I can remember my walking being described as beautiful in this regard. The heel strike was apparently an indicator of my parent’s compliance with my physiotherapy regime.

Actually, I have admiration for my toe walking contemporaries, as for the last three months of my walking life, I became one of them; stiff and sore, every step was truly agonising. A lifelong friend with CP, herself a confirmed toe- walker however, tells me that your feet get acclimatised to an extent when you have done this from a young age. Yes, there is soreness but somehow she keeps going. At the age of 15 she was offered an operation to flatten her feet and turned it down, because in her mind she wasn’t broken and did not need fixing. For me it was different, I was always in pursuit of “normal” it obsessed me in many ways and when my grip on it faltered, I confess to throwing every intervention and drug at my body to make me better, or at to least arrest my decline. This is something that I regret in many ways as I often feel like I have become so defined by what might have been, that everyone seems to have missed what was.

I think a lot about my early life and the way my parents were almost manipulated into making choices for me to retain the good opinion of medical professionals, even if this meant going against their own parental instinct. Physiotherapy was the be all and end all of my early years and mainstream education was off my agenda because of this, despite mum and dad thinking integration was a good idea.

My parents frequently say I could have been a doctor had I not had cerebral palsy. This is due to my ability to recognise certain medical conditions easily and understand the treatment and monitoring of them. My dad commented on this recently, when I was discussing some of mum’s medical tests and cancer treatment, to which I responded, ‘I think I would rather have been a journalist than a doctor, and I am only good at medicine because I have been around it so much.’ Sometimes it is like being in the shadow of a ghost or an older sibling; it can feel like you are spending your entire life trying to emulate or outrun them and put your own mark on the world. One of the big problems I have found is the scarcity of people like me. Growing up I had few role models and nobody I could particularly relate to, the only successful disabled people I remember from my childhood were paralympians, whilst I was a keen rider and swimmer and competed in both arenas I never saw myself as sporty, nor did I want to be like them.

In my last term at school, a physiotherapist asked me what I planned to do when I left school. I responded, “I think I’ll be a writer Miss”. She must have been very sceptical. It is the one dream I clung to through everything. Today I am a writer, journalist and sociologist although, not the foreign correspondent, flying off to troubled regions that I might have been. I have to think that on reflection I am, as the late Christopher Reeve said, still me!

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!