Tag Archives: cerebral palsy

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.

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.

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!

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.

 

Positive Thinking

This week I have been feeling good, the type of good I had almost forgotten existed. This improvement is I think, in part at least, due to the reduction in healthcare appointments. My feet have as they say ‘got with the programme’ and made a concerted effort to heal themselves. This means that I can now dispense with the unfashionable, but I have to say very effective, plastic/rubber combo, sock device I have been putting over my dressings. This device has lead to some very odd moments in my bathroom. If I had a camera in the room I would have produced some very entertaining footage.

Sexy foot protector
Sexy foot protector

A few weeks ago I was due to go away for the weekend and still had not perfected the art of putting the device on solo, after much thought my mum suggested putting on a nylon stocking so that the device had more of a glide. I have to say it worked like a charm and thus a six pack of supermarket, basic brand nylons were added to my disability essentials kit. Catheters, wheelchair, medication, nylons and I am good to go. I have alway wanted to make a slinky exit from a shower, shrug into a crisp, white bathrobe with my hair wrapped casually in an equally white towel. Yes, my bathrobe is white. However, most of the time it has a black stripe in the middle of it where it has got caught up in my wheelchair wheel, which is not that Hollywood.

Recently while at the railway station I decreed that in my next life I want to come back as tall as I am now, but have the use of all four of my limbs, just so I could have the experience of walking down the platform with some cool pull-along luggage in a matching figure flattering, long coat. Try as I might, I have never yet managed to achieve this look sitting down. Tempted by the displays of colour-coordinated trolley bags, I have on occasion experimented with a pull-along bag. This has mostly just resulted in my damaging the skin on my hand as a result of its unplanned union with the metal baggage handle and one of the components of my wheelchair. I tried to get a long, smart, wool winter coat once but my comparatively muscly arms and thin body means that any long coat that fits my upper body, made the rest of it look like a sack of potatoes.

I read an article by a writer called Melanie Reid who broke her neck in a riding accident and now uses a wheelchair. In it, she talked about her feelings when she was able to stand and walk with the aid of a robot called Rex. This got me thinking about my own feelings such as, “Could I walk down a railway platform with my glamorous baggage in a robot called Rex?” I concluded yes I could, but it would not be sexy, which sort of defeats the object for me.

Some years ago, I saw a consultant who told me and my parents that it was my comparative height that had put me in a wheelchair sooner than my peers. My mum felt partly responsible as I get my height from her side of the family. As I pointed out though, I would have ended up in a chair anyway and at least the height I am, I can reach more things for myself.

For the last few years I seem to have spent an inordinate amount of time bouncing around different consulting rooms being told to accept deterioration, that I am getting older. I felt as though, all of the medical professionals believed that it was someone else’s job to help me. Six months ago a new doctor joined my GP practice, he was like a breath of fresh air. You could go into the consulting room, explain your problem and he would work with you to solve it, he didn’t want to have to refer you anywhere else. He understood me when I said that when I was well I could write (like this blog piece), but when I felt unwell I could barely get out of bed. He actually thought it was worth trying to get me the ability to write back, rather than tell me to accept the loss as part of my deterioration. He made me feel that I was worth the effort on his part. It was so refreshing having someone recognise that I had to have a point to my life.

It was this same GP who started me on anti-depressant medication, something that I had been hitherto too embarrassed to ask about. I was troubled by the thought that my personality would begin to be controlled by chemicals and I would lose part of ‘me’ and also by the idea that my ability would be regulated by drugs. It felt like one too many things to be dependent upon. I was talking to a colleague at a conference recently and something she said really put things into perspective for me and made taking the tablets less troubling. She said, “If you were diabetic and it was insulin, you would take it wouldn’t you?” The upshot is, I have taken them for about a month and a half now at the proper anti-depressant dose and I feel human, not like a dead person any more.

The friends I have made at one of my support groups tell me about getting tattoos done to mark significant events and milestones in their lives. I was a bit tempted to have one done, but I thought that there was too great a risk of an infection, or poor spelling if I had words. I settled for a silver bangle engraved with ‘Resurgam’ (I will rise again). Four days later I promptly dented said bracelet on the engraved word, getting out of my wheelchair. Ironically, I feel that this makes it even more appropriate for me, I am a bit battered, but still rising.

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.