Tag Archives: Disabilities

“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!

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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

Customer service

I woke up this morning and decided that it was time to come out of hibernation; a state that I have been in for the last few weeks, brought about by Christmas indulgence. Turkey, chocolate and those good old fashioned roast chestnuts have combined to work their spell. I can feel my jeans taking the strain. Inactivity has caught up with me.

I have reached this conclusion after spending the last half an hour trying to convince myself that the jeans I have on were just tight from the wash. I have to concede defeat and admit that, yes, I have definitely expanded!

Christmas is probably the only time of year when I have a prolonged period of complete inactivity – mostly because, in connecting with family and friends, it is inevitable that I spend more time than normal indoors.

It seems to come as a shock to the general population that, as a wheelchair user, I might sometimes be anything other than inactive.

Last year I was in a hospital waiting room and the person next to me asked how I stayed so thin in a wheelchair? I didn’t know whether to be shocked or flattered by this question, I hate the fact that people assume I am inactive. It takes me twice as long to do a basic food shop because I frequently have to stop what I am doing and trek half way round the store to find someone to reach something from a shelf. At the end of this mini marathon, I am invariably seen hanging shopping bags strategically on the back of my chair. In my case three bags are the limit; any more than this and the chair will tip backwards. The result of this is, trust me, not very graceful and in my case was a painful reminder of just why the NHS wheelchair service advises not to put heavy things on the back of your wheelchair.

Over the years I have devised my own methods for carrying those difficult-to carry items that are the impractical to attach to a wheelchair. I can carry bags round my neck, leaving my hands free to propel myself.

My consultant has conjectured that these antics help explain recurring pain, stiffness, and postural problems I am experiencing of late. I have pointed out that I have tried to evolve another pair of hands – but somehow, I don’t think I have the spare time to devote to the process. At college, when I still walked with crutches, I carried folders in my mouth. Sometimes people would walk past me, stick out their hands and yell “Drop!”.

I had to give up this method some years ago to preserve expensive dental work.

I have, of late, experimented with carrying two bunches of carnations between my chin and my chest – which was fine until passers-by stopped and asked if I was ok? Having to respond resulted in losing the tenuous grip I had on my shopping.

In December, I considered designing a sign to wear about my person saying, “Please don’t talk to me, I’m coping”; thereby allaying the fears of the well-meaning, helpful masses who are fully charged with a measure or two of Christmas spirit.

Those good-old “independence skills” I had drilled into me, more than half a lifetime ago, just will not release their tentacle like grip on my psyche. I find myself almost magnetically drawn to “have a go”.

Twenty years of inclusion legislation has supposedly produced an atmosphere that fosters awareness of disability and barriers to participation.

Some weeks ago, I entered an article I had written in a competition. We only filled out the necessary basic information on the forms in my dyslexia support session. Support time was running low and the entry deadline was on the horizon. I was required to make the entry fee payment by BACS, something I had never done before.

I sat in the reception area of the Dyslexia centre and, as I looked at the form, my stubbornness reared its ugly head. Well, it was that or the constant talk of austerity and cuts to services which rekindled my maverick streak.

Cerebral palsy, visual processing problems and visual tracking difficulties were not going to get the better of me. Support worker?; who needs one of those? How hard could this be anyway?

I scanned the form and found a note, “If you have any queries call us on ….”.

When I did so, I was greeted by a very brusque voice. I explained that I wanted the details of where to send the BACS transfer to and the voice continued in a rather exasperated tone, “The email address is on the form” (it was in light grey italics, on white and I had missed it). She then asked if I still wanted the email address and continued by saying, “Send the email “care of the secretary. Everyone can spell secretary can’t they?”

I didn’t have time to argue with her by saying, “Well, in the room I am calling from, the odds are probably stacked against it”.

Am I alone in being depressed that the general public, even ostensibly professional and well-educated ones, even with almost two decades of inclusion built into social policy and even with the modern emphasis on disability awareness, appear to resolutely refuse to truly understand the issues faced by those with disabilities?

Only when this changes will such problems be properly addressed at a grass roots level.

Proof that Disability Awareness is on the Rise

I never stop being surprised by the odd and often intrusive questions I am asked in relation to my disability. I can get into a taxi for example, and before I have finished fastening the seatbelt the questions begin, “What have you done to your legs then?” In response I find myself doing complex mental calculations that take into account length of the coming journey, my mood, level of patience and the need to explain a neurological diagnosis to someone who may well have never heared of the condition I have.

On a bad day, early in the morning my response would be, “It’s just something I was born with.” in the hope that I can shut the conversation down and get on with my day unencumbered. If I have time on my hands or am feeling motivated to spread the word, make a difference and in some small way put a dent in expectations that ultimately bring about social change, you will get an answer that begins, “Well it’s not so much legs as brain.” then going on to explain the risk factors of being born prematurely and the effects of multiple respiratory arrests on the infant brain.

Many people think the past 20 years has been a watershed in terms of social attitudes and this is true in many ways. However, I am still surprised how people constantly assume that you want to discuss every aspect of your life in mind numbing and yes startlingly intimate detail. On the positive side this does mean that at least people think there is a possibility of my having a significant other, and this is progress in itself.

The sociocultural distance travelled was pointed out to me a few years ago in a rather unexpected and amusing incident. There is a small corner shop on the high street, near the flats where I used to live, the sort of place you could pop to when you were running short on milk. Most of the buildings locally were erected well over a century ago and as a result they were not especially wheelchair friendly. The shop in question had three steps up to the front door which made for an interesting retail experience. When shopping here I would have to stop my chair, bang on the window, or grab a fellow shopper on their way inside to get the assistant’s attention. The shop assistant would then come to the door, I would shout up my order, they would fetch the items and bring them down to me, I would pay, they would go back in then return with my change and a receipt.

One hot Sunday in July I was sitting in my flat’s communal garden with a friend, we both wanted an ice-cream and I decided to throw caution to the wind and go and get them along with a packet of Hobnobs as my parents were visiting later in the afternoon. I set off to the local shop to get them. I got to the shop and went through the usual routine of banging on the window, the elderly male assistant stood at the top of the steps and I called up the order. All was going as usual as I sat texting friends whilst waiting for the old man’s return. He came back after a few minutes with two Magnums wrapped in newspaper to slow their melting, he placed them silently in my lap along with a packet of ……… condoms!I sat staring at them, featherlite and ribbed for her extra pleasure, then looked up at him; he stood quietly unable to meet my eyes. I handed a £10 note over, he dashed up the steps and came out in a flash with change and a receipt and I wheeled myself hurriedly away. I imagine he thought I was in for a very interesting afternoon, that didn’t involve dunking things in tea!