A Long Way To Go

Whenever nature calls, wherever we are, we must answer it. This is obviously the case regardless of whether you are able-bodied or disabled, but as some of you will know from “The Sixpence Test” – which I wrote last year – I have had a number of wildly different experiences where toilets are concerned. When said experiences are not so good, I am sadly reminded that society still has so much more to do before it can be truly accessible to the disabled, and I was unfortunately faced with yet another one just last night. It came in a local restaurant, which I was eating at for the first time. I found it easy to get into, thanks to a ramp the staff folded out for me, and the meal was to die for. The establishment would, however, lose crucial marks when it came to me needing to spend a penny later in the evening.

Having been told by a fellow diner that the toilets were just around the corner from where we were sitting, I excused myself and left to look for them, confident that I would be able to cruise into the disabled cubicle with ease. Imagine my surprise, then, when I discovered that there was no disabled toilet at all – and that neither of the others could accommodate my wheelchair. I initially wondered if there might be another one located elsewhere in the restaurant, but they promptly indicated that this was not the case. Hearing this both angered and frustrated me. I had assumed that it was a legal requirement for public places such as restaurants to provide such facilities for disabled customers, but it would seem that either I was wrong, or there is a loophole allowing proprietors to avoid including them. Either way, people like me were clearly going to be in for a nasty surprise if they wanted to do their business in this particular eatery.

The lack of a toilet did, of course, make the situation at hand more desperate for me. By the time we had established that there was definitely nowhere I could use in the restaurant, I really did need to go, and the only alternative was to do so in the pub across the road. Just getting to that involved a short detour, since there was no dropped kerb in front of the restaurant, and that meant another unwelcome prolonging of my discomfort. Having crossed safely, though, we got in, and I weaved through the throng of drinkers to reach the toilet door. I grabbed the handle and frantically tried to open it, but to no avail. It was locked, and we had to ask for the key at the bar. This seemed unnecessary to me, and in the circumstances it only annoyed me, but I still understood that it was most likely done to prevent misuse of the toilet by people who really did not need to be in there. In any case, whatever annoyance that made me feel was nothing compared to what I felt when I finally got in. Up to now, we had been inconvenienced to such an extent that I could only just hold it in when I was able to relieve myself, and the configuration of this toilet also did little to help me. I found it at the end of a small corridor, and whilst I had all the space necessary to manoeuvre my chair as I needed to, moving my actual body once out of it was less easy. The toilet was positioned between two walls, as you would expect – but they, and the rails bolted to them, were rather far away from it. That meant they were completely useless, since I was unable to lean on them, and was left with no choice but to perch awkwardly on the toilet seat when adjusting my trousers.

I was astounded that it had taken so long to do what other able-bodied patrons could do in no time at all, and upon emerging I was certain of two things – that I would relate my latest tricky experience to you here, and that as long as there is negligence and a relative lack of education regarding disability, daily life will continue to present many unnecessary challenges to the disabled. I am now wondering how such education might be made more prominent in society. Maybe I will use Third Time Enabled to let you know again, if I have any ideas. In the meantime, we still have a long way to go – in my case, literally!

Mason

The Pull, Part 6

The formalities separating me from the start of university are gradually diminishing day by day. Last week, I participated in an assessment arranged following my application for Disabled Students’ Allowance – something which proved to be very fruitful indeed. It answered more of the questions Mum and I had about the support I would be entitled to as a student, and at its end I was relieved that my pre-Winchester to-do list was one item shorter. She and I travelled with Louis to the offices of a company that I was subsequently told would collaborate with the university to work for my benefit; once there I met with a very helpful man who started to ask me about how cerebral palsy affects me in certain situations. Obviously, as you might expect, the questions mostly related to education and how I have coped within it.

Among other things, the man asked what I found difficult during my school years, and what I still find difficult now. He asked about the people and the resources I have had at my disposal to make things easier, and based on my feedback he was gradually able to recommend the support that would best suit my needs on my new course. As I had anticipated, there are many options open to me, and I intend to pursue a great deal of them – not least to acquisition of a piece of software to assist me in lectures. My handwriting is somewhat slower than that of others, making it hard to keep up when I need to jot down a series of notes. With this equipment, however, I would no longer have to worry about such an obstacle. It is compatible with a microphone that can record a single voice whilst excluding all other surrounding noise, meaning that every crucial piece of audio can be captured without a problem. On a computer, this audio can then appear along with the breaks in speech, allowing the user to isolate any given section – this can be especially helpful if a particular piece is more relevant to an essay than another. In addition, these sections can be colour-coded to help them stand out, and notes and photographs can be placed alongside them as further visual aids.

I saw this all demonstrated in my assessment, and was left absolutely sure that it could be beneficial to me once I am settled in Winchester. I expressed my enthusiasm and was told that I am entitled to four hours of tuition in the software’s use (although I don’t have to use all four of them). If I do go on to accept it properly, I will be very eager to see how it can help me, and it was very encouraging to hear about everything else that the company and the university could do for me. It just goes to show that anything is possible if you ask for it – and this positive mindset makes the prospect of requesting help at Winchester even less daunting. Very few questions remained before the assessment, and Mum and I were already highly enlightened on arrival. It is even better to know that we are now tantalisingly close to being fully knowledgeable about what lies ahead.

Mason

Emerald Swathes, Part 2

Christopher crashed through the long grass and low branches, determined to look at this mysterious new cap more closely. They were unlikely to find anything in it aside from a label bearing a first name, but it would nevertheless be a useful clue as to the whereabouts of its owner. They reached it and froze, extending a somewhat hesitant arm towards it as though it were a venomous snake. Their fingers curled around its discoloured edge and they slowly plucked it from the ground. Bringing it nearer to their face, they shook it to ensure it was straightened. They narrowed their right eye while expanding their left like a fleshy magnifying glass – and just as they had suspected, the cap did bear a label on its inner stitching. The writing was very faint, but scribbled in what Christopher believed to be permanent marker was undoubtedly a name: “JIM”.

What Christopher initially failed to notice as they turned the cap over to look at this was a single playing card – the queen of hearts, to be precise – fluttering gently out of it, all the way down to their feet. They eventually caught sight of it just as it settled on the edge of one of their battered shoes, and it was the card – not the cap – that convinced them they’d definitely stumbled upon something fishy. Finding a piece of headgear on its own in a forest was feasible, but someone practising their magic tricks there, in total solitude, seemed much less likely. Christopher peered down their nose at the card in a way that was almost cautious, as though they expected it to come to life like a mysterious new species of insect. They bent down to retrieve it, and made sure to examine both sides for any further clues. Finding none, they pocketed it, and feeling more than a little disturbed by their initially soothing location they moved out – only to be confronted by yet another surprise.

Christopher was taking one gradual step after another, travelling deeper and deeper into the forest that lay on the other side of the idyllic opening. Just as before, very little light was let in by the tree canopies, but Christopher’s eyes had adjusted to such an extent that they could identify certain small details on the path ahead – if you could even call it a path. Christopher was the one forging a trail here, as twigs snapped and dry leaves rustled beneath their feet. Every so often they would kick away a discarded sweet wrapper or crisp packet, perhaps left by the last poor soul to find themselves lost here, with no clear view of any sort of horizon. These would roll away, carried gently by a soft Spring breeze of which Christopher could never quite trace the source. They would watch each piece of debris vanish into the shadows – everything really was deserting them, and seeing this happen reminded Christopher of exactly how isolated they were around here. They kept trying not to think about it, but seeing all of these things dance gracefully in mid-air proved to be more captivating than they had expected. For what seemed like mile after mile, they saw the same twig-leaf-wrapper cycle of objects, and the pattern became predictable and monotonous. Christopher was glazing over, and came to the point of switching off entirely before another playing card floated in front of their eyes – much to their sudden, spontaneous bewilderment.

If Christopher had been in any kind of doubt that the first card in the cap was a random countryside find, this definitely proved it wasn’t. Neither, when Christopher came across it, was the third. Or the fourth. Or the fifth. By the time the sixth appeared, it occurred to them that there was a trail – and not a lazy, wildly scattered one either. This was unmistakably neat, and it followed the exact path of Christopher’s journey, one that whoever left these cards could not possibly have known was going to be made. As the trail went by, it occurred to Christopher that there were far more than 52 cards here, and that this person must have had a rather large deck. Or just several industrial decks. Whatever the case, they were definitely leading to somewhere, and sure enough, the last card soon hoved into view, marking the end of the trail.

Christopher couldn’t believe what they were seeing. In a much darker opening was another tree stump, but here it was being used almost as a makeshift poker table. Next to it sat a wheelchair-bound boy of around seventeen, with a mass of dishevelled curly hair on his head and yet another pack of cards in his hands. As Christopher looked on – open-mouthed in disbelief – the boy tried frantically to shuffle them, cursing to himself whenever he lost his grip and they tumbled into his lap. He kept on trying again, completely oblivious to Christopher’s presence, and he dropped and gathered his cards several times before noticing he was no longer alone. At last, his eyes darted up to meet Christopher’s. He froze, loosening his grip on his cards slightly as he surveyed his new companion from head to toe suspiciously. There was silence as he did so, since Christopher knew they were far too baffled to speak. It was down to the boy to break the ice, which he did after a few minutes, when he had completed his checks and a smile was gradually appearing on his face:

“My name is Jim,” he said calmly, before fanning the cards out with his fingers and leaning forward in Christopher’s direction. “Pick a card. Any card…”

To be continued…

Mason

The Trooper

Just under a week ago, I picked up a brand new electric wheelchair. To the untrained eye, its somewhat unremarkable outward appearance and black paint job might make it indistinguishable from my previous one, but look deeper and you’ll find several improvements. The most notable of these is the addition of an extra set of wheels, so that it now has six instead of four. These have the effect of improving the chair’s agility – it is now much neater in its movements, requiring less input from me on the joystick when I need to get into a tight space. Furthermore, the two larger wheels that were previously at the rear have now been centralised, enabling me to turn on a sixpence more quickly. The chair does both of these things very smoothly, and is completely unfazed by bumps and kinks in the ground below – where its predecessor would shake and rattle dramatically in response to the slightest jolt, the new model is silent, the extra wheels allowing it to glide cleanly and gracefully around like a metal ballerina dancing on a bed of air. By this stage, you can probably tell that I’m very impressed with what I’ve been given!

The chair’s merits don’t just lie in the newer features, though. Since it is essentially a giant Meccano kit, which took an hour and a half to dismantle and reassemble before I received it, old parts can easily be screwed in amongst their replacements. When I first sat in the chair, its armrests were too far back and too short, making them inconvenient for me when driving. As it turned out, this wasn’t a problem for long, as the engineer was simply able to attach my old ones instead, easily rectifying the situation. Part of my old seat was also carried over to the new chair to give me a similar sitting position, adding to the Frankenstein’s Monster-style feel of the machine. As a result of these modifications, I have a chair that is practically tailor-made for me – even before it was ordered, we requested that it be exactly the same width as my old one, so that I could still drive it into the back of our car. The control panel and buttons are all the same too, so there are no new processes for me to learn. It’s as the old saying goes – if something ain’t broke, don’t fix it.

Lying amongst all of the old and new abilities this chair has is a single, fundamentally important one that was the main motivation for having a new one. The University of Winchester’s main campus is rather steep, to such an extent that taking my old chair there would most likely have been downright dangerous. I have tipped up in it before on a much smaller incline, so steeper ones would have posed a much more serious problem. Thankfully, due to the two extra wheels at the back, it is impossible for me to perform a wheelie now, so I am equipped with just what I need to tackle a brilliant three years’ study without any accidents. This new chair will be my little trooper!

Mason

Sliding On Out

It might not seem like an important detail at first, but when I entered my Winchester taster session last weekend I decided to sit on a normal seat. This was primarily so that I could access a table more easily (although Lara had offered to move it) and be more comfortable on what was effectively a big sofa, although the decision may have had a slightly deeper motivation behind it. As I stopped my wheelchair next to the seat, lifted the armrest up and began to slide over, I must have been partly determined to show all of the new people in the room the independence I am capable of. Whenever I do transfer to another chair, it does tend to make a scene – probably because some people don’t expect me to move at all – and maybe, on that one occasion, I subconsciously used that to my advantage.

Firstly, the footplates on my wheelchair are swung back, ironically to stop them getting in the way of my feet as I move. If there is not enough room for them to swing all the way, I take them off entirely, meaning that I have to find a surface they can lean against until they are put back on again. This usually involves at least a small amount of clattering about, and on Saturday that did turn one or two heads. Then, as aforementioned, my right armrest is raised, removing the only obstacle stopping me from shuffling sideways into my designated new seat. I start to move, and my bottom edges off of my gel cushion. At this point people are really looking, but I take no notice – I certainly don’t take it to heart. On the contrary, it is a good opportunity for me to show that I am not fused to my wheelchair, as one girl in sixth form believed until we decided to set her straight one day. I arrive in my new location, and sit back as far as possible to make myself comfortable – on Saturday, when I had positioned myself squarely in front of the table I needed, I took a moment to smile at one or two people who were looking, just to reassure them that I was OK.

Occasionally, I like to go the extra mile, just to demonstrate that I really can be fine without help. At Winchester this meant using my initiative to take my notebook and pen out of my bag before transferring, pairing them up together neatly on the desk as I leant across to it. I politely declined an additional offer of assistance from Lara (perhaps wanting to impress her and make a good first impression), and only asked for her help when I realised that getting my things back across to my bag would be slightly harder at the end. As I got back into my wheelchair again, she kindly kept her eye on me to make sure I would be safe, although she didn’t intervene directly – she could evidently see that I had everything under control, so I must have gotten my point across to her. We left with big smiles on our faces, having bonded so well – and, through something that is so normal to so many other people, I might just have shown her that I’m not completely helpless. That’s important, and I look forward to conveying it more often in September!

Mason

The Condition You Have Described Has Not Been Recognised

Mason asked a fair while ago if Will, Tamara and I could write a post each about our conditions, but naturally I had completely forgotten about it until Will wrote his own. Luckily I can use my condition as an excuse here, as memory issues (also known as “fibro fog”) are a big symptom. This leads me nicely on to explaining what on earth is wrong with me – specifically, Fibromyalgia.

For those of you who are unsure of what Fibro is, it’s described as a “long term illness” or “condition”. The biggest symptoms are widespread pain (sometimes chronic), fatigue, and muscle stiffness. It also causes memory loss (as mentioned previously), difficulty sleeping and concentrating, and headaches. Unfortunately, not much is known about Fibro. There has been little research done into it, and they have struggled to find a common cause. It has been suggested that it’s linked to abnormal levels of particular chemicals in the brain and the way that the central nervous system processes pain messages that are carried around the body. The main triggers appear to be mental trauma (e.g. losing a loved one or having an operation), childbirth, and inherited genes. Mine is likely to be a combination of the former and the latter, as my mother also suffers with it.

I was only diagnosed in January this year, after seeing several specialists, having a very minor op for a dislocated jaw and being misdiagnosed a couple of times. They informed me that my record showed symptoms from as far back as Year 7, when I was struggling with back pain, and then from Year 9 onwards, in the forms of recurring costochondritis, headaches, and fatigue. By far my biggest issue, as a lot of Fibromyalgia sufferers find, is the lack of support I receive. Not only is it an invisible illness, but there is rarely any awareness raised for it. I get a lot of “you shouldn’t complain so much”, “it’s all in your head”, and “you’re awfully young to have a condition like that”.

I sometimes feel almost claustrophobic about it all. I rarely talk about it to anyone anymore unless they explicitly ask because I’ve been made to feel like it’s a hassle listening to me. Luckily, I currently work in a pharmacy – so my boss has the pleasure of being the person I confide in. I can only hope that anyone reading this will know to make sure their loved ones are okay and supported, whether they are affected by a condition or not.

Everyone is fighting a battle you know nothing about. Be kind.

The Sixpence Test

Yesterday marked Mum’s birthday (I’m far too chivalrous to reveal a lady’s age), and to celebrate it we went out for a meal. Yes, my main was fantastic, yes, the slice of chocolate fudge cake I had afterwards was very generous, and yes, I laughed a lot as well – but I’m going to cut to the chase here. The evening’s crowning glory lay not in the food, drink or company, but in the disabled toilet facilities, which stood head and shoulders above many others I’ve used recently. When the able-bodied amongst you are out and looking to spend a penny or more, you are probably able to take the environment in which you do so for granted and without a second thought. It is unlikely to prove impractical to you in any way, shape or form, and as such you can breeze in and out leaving only the commanding hum of the hand dryer – and no trail of devastation – behind you.

I and my fellow disabled loo patrons are not always so lucky. The history of the disabled toilet is littered with major blunders that make these cubicles, which can be designed with a foolish lack of foresight by people who will never have even the slightest reason to venture into them, completely inaccessible to people with handicaps of all shapes and sizes. Over the years I’ve visited disabled facilities so small that even the most compact wheelchair user could not close the door behind them, let alone have enough space to transfer safely between toilet and chair so they can do their business. Those who dare to provide rooms so inadequate are showing blatant ignorance towards the needs of the disabled, and their disrespect is therefore equally as clear and insulting. When I find myself with so little room to manoeuvre and do what is necessary, it becomes apparent that perhaps the only reason some business owners install disabled toilets at all is to tick a box and satisfy legislation. I can only assume that said people still have more reading to do on what equality means.

There are, of course, people who get everything right with regards to disabled provision. The toilet I used last night was clear evidence of this. You could definitely swing a cat or two in there, and upon entering my wheelchair was able to turn perfectly on the spot – or “on a sixpence”, as some like to say – without either end activating the hand dryer or scraping paint off the wall. I could park up and move between gel cushion and toilet seat with room to spare, and without having to worry about getting tangled up in the emergency cord and pulling it by accident. The whole process was a breeze, just as it should be, and this was thanks to a great deal of careful consideration from a proprietor who realised their duty to make every disabled customer’s experience a comfortable one. When it was suggested that I write a post about this, I was encouraged to name and shame those who show neglect and disregard for disabled comfort breaks. I cannot do this, as I fear it would be a hot-headed affair, but I can live in hope that they realise the error of their ways and do their bit to make our everyday lives that little bit simpler.

Mason

Unwritten

Will wrote about his dyspraxia recently because it was our shared intention that all four members of this project – Emily, Tamara, Will and myself – would write about our respective long-term conditions. In my case, that obviously meant banging on about cerebral palsy again, which I suspected you’d heard enough about for the time being, so if I was going to do this I’d have to think of another way of talking about it. And that seemed impossible. A lot has been covered, so what could I tell you that you probably haven’t read already?

Then I had a thought – namely that there’s always more to write about any given topic than you think there is. Take my life, for example. As I may have said before, I resisted starting a blog for years, and all because I doubted that I’d have more than ten posts’ worth of material. 108 posts (including this one) later, and I’d like to think that Third Time Enabled is still going strong. That must mean that either my life isn’t as dull as I thought it was, or I’ve just been consistently repeating myself for the last two years. I would imagine it’s probably the latter, on second thoughts! Seriously though – at the moment it might seem like I’ve exhausted every possibility when it comes to talking about any topic, but maybe it’ll transpire that there’s a new perspective on my disability that I haven’t found yet. Part of the beauty of life is that some of its best stories are yet to be written, and when I find them I’m glad I have the perfect space to bring them to life.

Mason

My Disability and Me

A couple of months ago, Mason popped up on Facebook and asked: “how does your disability affect you?” This made me think, as I had never really thought about it.

I have mild Dyspraxia, a disorder which affects hand-eye co-ordination. This means that my balance, handwriting, drawing and other such activities have been skewed. I was first diagnosed when I was about 7, when my teacher realised that I was as clumsy as a one-legged horse on Strictly Come Dancing on ice.

When I pondered Mason’s question, I realised that my Dyspraxia had a bigger effect on me when I was growing up. My failure at sport and dodgy handwriting often led to bullying and name-calling. And I had them all, including “retard” and “spastic”. This and me feeling like I wasn’t good at anything led to a huge decline in confidence and self-esteem. Another thing that happened was that I would give up a lot. I know people who have Dyspraxia who have become good at sport, defying the odds to prove themselves. I tried to do that. I started tennis and even became good at it. But for the most part, I just stopped. I’m still just as bad at most sports as I ever was. For a while, I used my disability as an excuse to not get involved. The only thing I kept doing was writing. The use of a computer helped with that, as I often felt that I couldn’t write things down as quickly as I wanted. The way I described it was that my hands couldn’t keep up with my mind. I also found that being friends with people like Mason has made me learn to not make my disability define who I am. I have never once known Mason to complain about his wheelchair, he just gets on with it.

As I grew older, I’ve put less emphasis on my Dyspraxia. People stop caring as much about how physical you can be, and with the help of a computer I can write as much as I want. The one thing that I have started doing as I’ve grown older, and Mason’s question helped me do this, was wonder how much my Dyspraxia impacts me. When I do something clumsy, I think “was that me just being clumsy, or was it part of my disorder?Or, are they one and the same?” The great thing about university is the fact that difference isn’t really a huge problem. When I got my laptop out in middle school and college, I felt like it immediately created a difference between myself and the rest of the class. Now I feel like it’s not even thought about.

So in answer to Mason’s question, I suppose it’s “it doesn’t anymore.” Every child with a disability feels like an outsider. I’m not trying to draw sympathy to myself in this, my Dyspraxia is very mild. I suppose I have two messages with this. To those that don’t have disabilities, I say this: be considerate with your words and actions toward those that do. And to those that do have disabilities, just know that it doesn’t have to be your defining feature. You don’t have to be known as “the kid with *Insert disability here*”. Choose your own label.

Will

“There is no greater disability in society than the inability to see a person as more.” – Robert M. Hensel