Tag Archives: Disability awareness

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.

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.

 

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.