Tag Archives: accessibility

“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.

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.

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!

A Dark, Divided Century

A few weeks ago I went to a local history event to mark the centenary of the outbreak of the First World War. The idea of the event was to commemorate and explore the different aspects or the conflict and look at how it has shaped the society we live in today.

There were living displays, men and women in period dress demonstrating everything from joining up for the Kings Shilling, to examples of battle kit that was issued. I have to say I was more than a little shocked at how meagre the kit was, it seemed to consist of little more than a scratchy woollen uniform, ration tin, shoe cleaning kit, a gun and a tin hat. It was both scary and poignant to think of thousands of young men, some little more than children, despatched to a hostile frontline.

Soldier's kit

The railway station where I live has remained remarkably unchanged over the last century, in fact when I am waiting on one of the three platforms to go off on my travels it has many times made the past seem somehow closer when I am on the platform. If you removed the electric digital announcement screens, it would be like going back in time. The ghostly figures boarding trains in their thousands become tangible beings; the ones who boarded a train compelled by social expectation to be men and fight never to come back. The entrance to Platform One now has a war memorial in remembrance of those who worked on the railway and were lost in the conflict.

The Great War, as it came to be known, saw change and development on several levels, social, technological and medical developments reshaped our society. The years leading up to war had seen growing support of the women’s suffrage movement that campaigned to give women the vote and afford them the same rights and opportunities that were available to men. However, war saw the suspension of political protest and direct action. Women took on a new place in society, they worked in jobs that were previously considered to be the preserve of men, they stepped into the breach taking on dangerous jobs working in munitions, nursing and driving ambulances on the frontline, proving equal in worth and ability to men. For women, war became a means to demonstrate the need for equality and recognition, one of the few positives, yet unintended consequences of war.

The event I visited had several stalls each chronicling the different aspects of life in war time. It was at one of these that I came across a period actor talking about developments in medicine that were a consequence of war. He talked about Walter Yeo, a sailor who sustained massive facial injuries in the Battle of Jutland. Yeo underwent pioneering treatment under the care of the groundbreaking surgeon, Sir Harold Gillies, who developed skin grafting as a way of treating individuals with serious skin wounds or burns. Walter’s face was painstakingly rebuilt over many years. Whilst Yeo was still described as having a severe disfigurement, he had significant function returned to him.

Walter Yeo (courtesy of Wiki)

Professor Roger Cooter wrote about the impact of war on medical advancements. He discussed how the First World War created an opportunity for medical development due to there being a substantial number of combatants presenting with very similar injuries.

There were 2 million disabled veterans who returned home at the end of World War One, who suffered a variety of injuries resulting in long-term disability, both physical and mental. This war made disability more visible and a pressing social issue. It resulted in the opening of the original poppy factory in Richmond in 1922 closely followed by Lady Haig’s poppy factory in Edinburgh in 1926. The idea behind both sites was to employ men who had suffered life-changing injuries in the conflict to provide them with a livelihood. This was the first time in history that society began to accept disability as part of social life and its responsibility. Disability through wounds became seen as almost an honourable state with the Silver War Badge being issued to soldiers who had been discharged due to their injuries for their service.

I am grateful for these individuals who, unwittingly, blazed a trail for me. They helped to create a world which was of a mind to accept me with all of my physical limitations. They fertilised the idea of an inclusive society.

I will remember them.

A painting I did to commemorate the centenary of WW1
A painting I did to commemorate the centenary of WW1

 

The 2nd of my Remembrance paintings
The 2nd of my Remembrance paintings

Disability, Fashion and Moving in High Society

The first magazine feature I ever wrote was about disability in the world of fashion, this was a few years before BBC Three’s Britain’s Missing Top Model in which 8 young women with a range of physical disabilities competed to win a fashion shoot in Marie Claire. I had never seen bodies that resembled my own in the world of high fashion, so it became a groundbreaking moment for me.

Previously, the disabled body was confined to the pages of disability equipment or specialised clothing brochures. I was a star of one such photo-shoot for a range of special needs tracksuits, all zips and elastic, functional yes, but certainly not catwalk worthy. I did however, borrow the zip concept recently.

Skinny jeans have become a bit of a nemesis for me. I have tried to acquire the art of wearing this figure flattering item only to be defeated by my lack of body flexibility. Now skinny jeans seem to be remaining a high street staple so I wanted to find a way to make the look work for me. I took my 3 pairs to a local alterations shop, explained my problem and asked if the jeans could be fitted with a zip from the ankle to the knee to enable them to be taken on and off more easily. I was thrilled with the result, a perfect blend of function and style. The alterations cost more than the jeans themselves, but it was definitely worth it.

Adapted skinny jeans

Having a physical disability can all too often mean that style and fashion are denied us, or come at a heavy price. Earlier this year I developed ulcerated feet and I was told in no uncertain terms that my stylish ankle boots had to go and be replaced with orthopaedic soft fabric sandals. I was somewhat put out as I thought my suede/ leather flat ankle boots were sensible enough. From the look the podiatrist gave them you would be forgiven for thinking I had rolled into her office resplendent in six inch wedge platform sling backs. It’s funny but shoes were always one thing that really made me feel different, the thing that no matter what I did, marked me out as disabled. I would be wearing a nice dress and the look would be ruined by my specialist orthopaedic boots, clunky monstrosities in a very limited colour range of black, blue, brown and the much coveted red.

In my life normal shoes were a rare event, reserved for special occasions. I think I remember every pair of normal shoes I ever had and the event that each pair related to. For the wedding of a lifelong friend of my Dad I wore a green and while frilly dress and little black patent shoes. I was bridesmaid at a cousin’s wedding and I had a pair of white canvas pump type shoes to wear under my dress, then on family holidays to the USA and Denmark I had training shoes. I can remember saying once that the underside of my feet hurt after walking in my normal footwear for a while. My parents were puzzled and tried to determine the cause of my discomfort, after some detective work they discovered that it was the terrain itself. The soles on orthopaedic boots are thicker than average and I had never become accustomed to feeling the ground under my feet.

The ability to wear normal shoes was just about the one positive I found in losing my mobility. I no longer had to pay mind to the support my ankles and feet needed. I also didn’t have to worry anymore about how durable the sole was because yay, I wasn’t going to be wearing them out by dragging my feet. However, my joy was comparatively short-lived, I quickly discovered that feet that have been fixed in position by an orthopaedic surgeon do not necessarily comply with or like being introduced to heels. The one time I found a pair my feet could be cajoled into I snapped the heel off the left one when my leg went into spasm and the boot heel was behind the footrest. This resulted in several Star Wars related jokes about feeling the force. To add insult to injury my feet became chronically swollen due to my reduced mobility, so much so that I had to start wearing men’s shoes which are correspondingly wider. I saw the NHS shoe fitter and the made to measure results made my childhood shoes look positively hip. Even my Mum christened the boots the ‘Passion Killers’, which coming from her was a damming indeed.

My friend Lorraine, keen to help solve my footwear issues, told me that Evans one of the leading UK, plus size, high street shops, had EEE fitting boots available. It was a lovely experience to put on a pair of shoes that were meant for a woman. It opened up new possibilities in clothing; I could now wear dresses and I felt attractive. I was determined to hang on to my new acquisitions, I had over 12 months of fierce arguments with my podiatrist before ulceration forced me to give in. I agreed to give the Pullman sandals a go. I have to say I was pleasantly surprised, while definitely not Manolo Blahnik, they were not an assault on my femininity.

The Pullman Sandal

Last Christmas my aunty’s present to me was afternoon tea at the Ritz, we arranged to go along recently and I had a lovely day out with her. The Pullman sandals were donned along with my semi-designer dress. I have to say that I certainly did not feel out of place, clunky or unattractive, in fact I am beginning to think I was a posh Victorian and have inhabited high society in a former life. The Ritz had ramps for my wheelchair, the best dairy-free cakes I have ever tasted in my life along with an extensive range of teas, always a winner with me.

Aunty Sue and me at The Ritz

Rising to the Challenge

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

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

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

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

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

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

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

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

 

Wheelie Good Omens

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

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

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

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

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

Non-Lateral Thinking

Yesterday, I had my long awaited visit from my local NHS wheelchair fitting department. Several months ago now people began commenting on a deterioration in my seating posture, I was slowly becoming banana shaped and was referred for a lateral trunk support to be added to my wheelchair. Those of you with disabilities will be all too aware of the importance placed on good posture. For my non-disabled readers I will provide a bit of an outline.

I have cerebral palsy, my condition is caused by damage to the part of the brain responsible for movement and coordination. This means that I cannot sit unsupported. Strenuous efforts as a child were made to achieve this ability in physiotherapy sessions, without success. The therapist would sit me on a square box stool with no back, it was a kind of sedentary, special needs, white knuckle ride. I would grasp the edges of the box, using my hands to maintain my position. There were other things we were told to pay attention to as well, this was not a passive experience, there was no time to chill out. “Feet flat, bottom back, back straight, head up and in the middle with your lips together,” were the instructions. Every part of my body had to be thought about and in balance.

When a close friend of mine who also has cerebral palsy, had a baby, we watched open mouthed as he met every one of those dreaded developmental milestones on time or even early. It was a lovely, new experience for both of us to discover that ‘early’, so often a negative label in our babyhood, could have a positive spin as well. Toddlers really do just get up and take their first steps, sit on the floor and just play without having to support themselves with their upper limbs. I am still struck by the wonder and ease of it. Human bodies and brains seemingly obeying a programme, that somehow mine forgot to download or, maybe the files were corrupted in the attempt.

My sixth form years saw me perched precariously on a laboratory stool holding the underside of the lab-bench with one hand. This was all that stood between me and a violent reunion with some classic 1960s flooring. I had to give this up in the end and use the provided special needs desk and chair as yes, even I can see you can’t do chemistry experiments safely with one hand.

I look back wistfully at the days when my wheelchair gave enough support for me to function well, when ‘trunk control’ was a meaningless phrase. I now gaze at my new reflection in the mirror, with my midsection encased in the metal and foam of my wheelchairs new addition. I look so straight I think someone must have subjected me to a starching. Only a month ago I transported two sheets of A3 artist board home by sliding them down the back of my chair and this seemed to do the same job, at a fraction of the price.

Getting dressed in my wheelchair this morning I wondered fleetingly who designs the appliances I use, because I have deduced one thing for sure, they have definitely never worn a bra, or tried to put one on, whilst sitting in my latest seating contraption. It took me three goes and I am thinking of putting in a requisition for a third hand.