The Lip In The Road

You’d think that now I’m rapidly approaching my 22nd birthday, I might be grown-up and mature enough not to overlook the important things in my life – especially not something as important as my wheelchair’s battery level. Sadly, though, it would appear that I still have much to learn, as that’s exactly what I did when going to and from work on Tuesday. The chair had supposedly been on continuous charge since the previous Thursday, when I’d last been out in it, so there was no reason for me to suspect that it would be anything other than full to the brim with power when I clambered aboard in the morning. That was, of course, until I turned it on…

The display told me that I only had five bars of power – two orange, and three red. That meant I had less than half a battery left, and I knew from previous experience that that was even less than it looked. Sure enough, as soon as I’d emerged from the garage and was halfway up the road, I was already down to two red bars – and they were flashing. Trouble seemed to be imminent, but I decided to continue on my way. I knew that the chair wasn’t designed to stop immediately when the last bar vanished, so I phoned Mum to update her, and then my workplace to let them know I would probably be late. The chair had never run flat in Winchester, with all its slopes and inclines, so what could possibly go wrong in the relatively flat Minehead?

The rest of the short journey to work passed at a range of speeds, since the chair tended to get faster and slower again at various points, usually depending on what the pavement was like. Going downhill, I found that gravity definitely helped – at one stage, an old lady with a walking stick moved over to let me past, and rather embarrassingly, I was as slow approaching her as she was approaching me! When I arrived at work, I reiterated my predicament to my colleagues, pulled up to my desk, and switched the chair off, knowing that it sometimes regained power when out of use for a while. Eventually, the time came to have lunch, and in hindsight maybe I should have stayed in the office to eat it, but I wanted some fresh air. Seeing that I had clawed back some additional power, I set off in the direction of the park.

As I had anticipated, I did lose much of that as I sped down the street, but I wasn’t going very far and there was only one road to cross. I’d do that, eat, get back and switch off again so that I would be fine to go home by myself. A foolproof and flawless plan, surely? Well, I was fully convinced that all would be well – until I’d finished my lunch and had to head back across that road again. By that point, the chair was covering most of my route at little more than a crawl – while it was just about still moving, there was no real power behind it. Imagine the true fear I felt, therefore, when I dismounted the kerb and the chair crept into the road at a snail’s pace, with a car approaching in the distance.

It stopped. I carried on, hoping that the camber at the side of the road would quickly flatten out so that I would speed up. Unfortunately, that took what seemed like an eternity, so opting to continue my day in one piece, I got back to the safety of the kerb, switched myself off once again and pondered my next move. I did try crossing at least twice more (with lengthy breaks in between each attempt), but I ultimately decided to give up altogether and send out an SOS. Another two phone calls to the office and Mum led to the latter coming to my rescue a few minutes later.

Once we were home, we set about trying to get to the bottom of the issue, which was still baffling me. I immediately plugged the chair back in upon parking in the garage and, as far as I was concerned, its display wasn’t lying – it was charging. So what was the problem? With some further exploration, Mum soon discovered that, in a nutshell, the charger wasn’t quite plugged in fully. Even though the readout was telling us what we wanted it to, the juice wasn’t going in as it should – so there you go. Everything that happened on that day came from one very small but crucial oversight. I’ll have to triple-check these things from now on, and I’ll make sure I push harder when I’m plugging in too!

Mason

 

Hooked

When I went out for lunch with Will recently, he asked me about a film I’d reviewed for Creative Non-Fiction a little while ago – the critically-acclaimed Whiplash. As we discussed our shared enjoyment of it, it occurred to me that I have never published a film or TV review – or at least a post of appreciation – here before. What I wrote for that film may yet be uploaded, but for this post I’ve decided to focus on Speechless, an American sitcom that has only just arrived on British screens. There’s so much comedy on offer to us nowadays that the good examples must really shine in order to stand out, and Speechless had me intrigued from the very first episode I saw. It’s being broadcast on E4, but I knew straight away that I had to dig deeper to make the most of it, so I found the rest of its three seasons on YouTube.

In case you haven’t seen it, Speechless follows the exploits of the weird and wonderful DiMeo family, consisting of mum Maya (Minnie Driver), dad Jimmy (John Ross Bowie), and their three children, Ray (Mason Cook), Dylan (Kyla Kennedy), and JJ (Micah Fowler). The latter is the one around whom all their lives revolve. Like me, JJ has cerebral palsy, albeit in a more severe form than me or the actor who plays him. He is given a great deal of physical assistance from both his family and his aide Kenneth (Cedric Yarbrough), with whom he forms something of a double act. The show’s title alludes to the fact that he does not speak – instead, he uses a laser pointer and word board to communicate, and Fowler had to learn to use both of these prior to taking his role. The result of this is a wide array of reactions and expressions, all of which allow the viewer to connect and laugh with him, without ever needing to hear a word. Of course, it is immensely satisfying to see that despite his differences to others, JJ is accepted and engaged with like any other teenager by his peers. So far, I’ve seen him join his school choir (using Kenneth as his “singing voice”), get drunk at a house party and find love, and I can’t wait to see him get up to more mischief – he isn’t made a total saint…

What’s even more pleasing to see, though, is cerebral palsy itself being highlighted so prominently on TV, and so brilliantly by Fowler. Whilst I have seen disabled characters and actors before (albeit not often enough), I can scarcely remember another occasion when I have seen someone with my condition. I’ve never met anyone whose cerebral palsy affects them in the same way mine does, such are the differences between cases, but to see it at all means a great deal. It’s therefore such a shame that Speechless has literally just been cancelled – I can’t help but feel that this important, entertaining and very much cherished show has been cruelly snatched away from me just as I’m getting hooked on it. Nevertheless, there are plenty more episodes for me to devour just yet!

Mason

 

Five Flights Of Stairs

When the security guard told me I’d have no choice but to stay where I was last Monday night, I knew what ensued could be both interesting and amusing. The lift in Lara’s block of flats had broken, and because she lives at the very top of it, I was obviously unable to get to the ground floor in order to reach my own flat. I instantly considered myself lucky that I wasn’t stuck with a group of people I didn’t know so well, and even more luckily for me, Lara and her flatmates were all too happy to have me. Once security had confirmed that the lift would not be fixed until the morning at the earliest, I retreated back into the kitchen – where we all usually socialise – to hatch a plan, while Lara and Ben went to my flat with my ID card to collect some of my things. They swiftly returned with a change of clothes, the leads for my laptop and phone, and my pyjamas, among other things – and they were all in a bag Deacon had lent them, which I still need to give back! My orange manual wheelchair was also summoned, and it waited patiently in the corner of the room for its call to action. Lara then very kindly said I was welcome to sleep in her bed, and that she would take the floor (insisting that the cushions from the sofa in the kitchen can be very comfortable when laid out correctly). We therefore had the sleeping arrangements covered rather quickly, and showering was a doddle too, even in a shower not designed for a disabled person like my own. I just had to keep my balance on my knees as best I could, without a seat to use!

The real challenge came the next morning, after Lara and I had giggled our heads off in the middle of the night thinking of names for disability dating sites (don’t ask). I would have to get downstairs somehow in order to reach my 9am lecture, and we had initially agreed that I would be carried downstairs in my manual chair with everyone in the flat bearing some of the weight. When we got to the top of the long staircase, however, we discovered that a Plan B would be needed, and fast. Ben had been confident that he would be able to lift the front of the chair all on his own, but it transpired that he had severely underestimated its weight with me sitting in it, as he immediately hurt his back upon trying to lift it. I joked with him beforehand about the risk of injury to anyone who tried hauling me around, but I was not actually expecting it to happen – thankfully, after apologising profusely multiple times, I think the risk of a lawsuit has now subsided. With Ben out of action, I then tried crawling down the stairs myself so that I wouldn’t hurt any more of my friends, but these stairs had sharp metal edges that dug into my legs and impeded my progress. Our third attempt finally got us to the ground, and it was one that I took part in on my own two feet, with Lara and Ryan each supporting one arm as Nora carried my wheelchair down behind us. Fortunately for her, it was a whole lot lighter without a passenger, and her back would emerge from this unscathed.

Our little trip meant – as the title of this post suggests – that we had to traverse the entirety of A Block and descend five whole flights of stairs. The support I had was sturdy enough to mean that falling over wasn’t really a concern for me, but it was for the other two – since I, the only non-walker of the trio, was going quicker than they could! Lara feared that I might end up pulling her over, and Ryan was losing the circulation in his  arm holding mine, so we stopped and started again wherever we needed to. Eventually, after many a hop, skip and jump (since I couldn’t get an entirely firm foothold on any of the stairs), we got to the bottom and I was able to transfer to my chair, much to Lara and Ryan’s shared relief. Once Lara had gotten to grips with pushing me along on the slopes of the steepest city in Hampshire, it was a straightforward downhill run to the lecture theatre – but going back up was a different story. When it was time to do that, Lara had to bend over in order to push properly and avoid slipping, so her inability to stand up straight – and my considerable weight – caused her more than a little bit of discomfort. Before long, the lift had been fixed, so she didn’t have to endure this for very long, but after all of her help and kind hospitality, buying her mac and cheese for lunch was the very least I could do. I am tremendously grateful for the assistance that everyone in her flat gave during the ordeal – above all, I think it served as a strong reminder of the importance and value of friendship. I just hope the lift stays reliable for a while…

Mason

The Man In The Melee

Another Thursday means another Publishing and Social Media class, and that means another short story! Anyone who read my last post will know that I shared three examples of Twitter fiction I was particularly proud of, and after a favourable response to those – particularly in this post from Penstricken – I have decided to show you something else that I wrote this morning. Its genesis was the photo you can see above, which I took when we were asked to take a picture that we could use as the basis for a story. We could do whatever we liked with it, provided that it did not exceed 2,200 characters, the maximum number permitted in an Instagram caption. When I returned from the university library to start my piece, I did so intending to write more fiction, but I quickly found myself drawing more and more from my experience, so what you are about to read is closer to a true account. That might have something to do with the fact that I have actually been trapped in that very same aisle once or twice before! As always, I hope you enjoy what is below, and do feel free to get back to me with feedback. You are also more than welcome to formulate your own endings if you wish – I intentionally left it open for you…

The library is very busy today, and that means congestion. It’s like Black Friday for bookworms. Everyone needs this for their essay, or that for their assignment, and they all want the same thing at the same time. I have what I need – now I just want to get out of the aisle. I see a girl at the other end, avoiding the melee at a computer, and I envy her. If she finds herself having a Clint Eastwood-esque face off with a fellow student, all she needs is a gap the size of a cigarette paper to slip on by. Letting me past, on the other hand, is like meeting an articulated lorry in a narrow country lane. If you and I are facing each other in an aisle, we cannot go any further – one of us will have no choice but to retreat. Occasionally, this means that I instantly become both highly conspicuous and highly embarrassed. All I want is to go through life without being too much of an inconvenience, and here I am exactly that. I am the road block in this aisle, and people are getting impatient on either side. I am gripped by panic and my heart beats like a machine gun in my chest. I find myself unable to take action – the world becomes a blur and I have no idea what my next step will be. I shut my eyes. If I ever doubted the world was still inaccessible to the disabled, I know it is now. I am a square peg stuck in a round hole, and I have to find some way to wriggle free.

Mason

Operation Bottom Shelf

My long-time subscription to F1 Racing magazine recently came to an end, and following this I realised that it would be pointless to renew it before my move to Winchester. I will therefore acquire them individually in the meantime, but even this has so far proved to be easier said than done. In my formative years, and prior to my subscription, I would enthusiastically visit newsagents in various places to pick up my copy, knowing that Dad would be there to hand it to me from the shelf. Now I am older, I am going to such places on my own, and I generally do so eager not to draw too much attention to myself. All I want to do is glide in as quietly as possible, find the magazine, pay for it and glide out again. I want to do this without appearing to struggle, and to be almost completely unnoticed even in my conspicuous and cumbersome chair. As you might expect, however, the layout of many shops means that this is not possible. Lots of interesting magazines, including F1 Racing, tend to be positioned only within reach of those who are much higher up than me, so no amount of groaning or straining from my chair will bring what I am looking for.

I could just ask for help, of course, but it always seems so silly to interrupt someone’s work or browsing just so they can remove something from a shelf for me (it was different with Dad – he was there primarily for that reason). In addition, I would feel like I was admitting defeat too easily – and it’s a magazine, for heaven’s sake! Why shouldn’t I be able to buy one in the same way as everyone else? To answer this question, I have to search far and wide, going from shop to shop on my own personal mission. As I do this, I have to make sure I don’t look too strange as I circle it carefully before exiting without buying anything. I slowly weave my way around to where the magazines are located, trying not to obstruct any other customers, and I stop next to the shelves so that I can scan them as closely as possible. The motorsport magazines are generally grouped into the same category as the regular motoring ones, so I know the titles to look out for – F1 Racing, for instance, can usually be found near Autosport or Motor Sport. 

If it is on the third shelf up or higher, any efforts I make will be in vain. Whilst I understand that not every magazine can be placed on a low shelf, my constant inability to independently collect what I want without any fuss does start to grate after a while. I can generally rely on one shop in my local area to always place F1 Racing on its lowest shelf, although there are admittedly a few I haven’t yet looked in. Said shop is occasionally without its copy, so maybe my next trip out for one should feature another mission to these uncharted territories?

Mason

 

Faith Restored

On Monday afternoon, my struggle against inadequate disabled facilities continued. Keeping the recent experiences outlined in “A Long Way To Go” firmly in mind, I considered things to have hit an all-time low when I was guided to a cubicle in a local car park by a friend in my time of need. I had my RADAR key with me, so opening the door was not a problem, and although it was a touch on the heavy side, my upper body strength meant I could move it independently. When the doorway was clear, the daylight revealed a room that should have been just the right size to accommodate my wheelchair – doubts remained, however, so I only tentatively moved in. Unable to hold the door behind me any longer, I relaxed my arm, and it slammed shut with a hefty thud. It was then that I faced my biggest challenge yet, and not in negotiating the toilet. I was suddenly finding myself stuck in pitch darkness, and unable to find a light switch!

There was absolutely nothing for my eyes to adjust to, so aside from the fact that the door was behind me, and the toilet somewhere in front, I had no idea where anything else was. I had no choice but to unzip the bag strapped to the left side of my chair and fumble for my phone. I pulled it out and the screen came to life, only to illuminate the positively disgusting lavatory visitors were expected to use. It was almost full to the brim with long sheets of discoloured and soggy toilet paper, as well as the leavings of the last poor soul who struggled in there. The walls and floor weren’t much cleaner, and the sink and taps – ironically for items that exist to wash your hands – were most likely dirtier than the fingers of anyone who has just done their business. I will admit that I can’t recall what the handrails were like, or even if there were any proper ones at all, but in any case, this was a toilet I simply could not use without a light and some degree of sterilisation.

I was desperate and without relief once again. I was also naturally angry, since I was having to take yet another detour just to perform a common bodily function, but thankfully the next disabled cubicle was only a short distance away. Out came the RADAR key again, and with the help of a kind stranger – who waited and held my umbrella outside whilst I did my thing – I was in. This new toilet was not spotless either, but it did at least contain a window, so natural light was in abundance. Space was plentiful too, and upon approaching the bowl I was grateful that it was positively poo-free. Lovely. Well, it wasn’t perfect, but it would have to do. Within a couple of minutes I was done, having been able to wash my hands without touching anything thanks to an automated system. I emerged onto the pavement again, and the stranger handed me my umbrella with a smile. The kindness of ordinary folk can manifest itself in the most insignificant ways, and that was one such way – but, with my toilet ordeal now over, the stage was set for another to appear.

The time came to go home, and that meant getting on the bus. This particular bus had evidently seen better days, however, and any modern designer with a shred of common sense would surely have made the wheelchair space much bigger – not that I could access it anyway. The issue on this occasion lay not with another wheelchair or a pushchair, but with a sea of suitcases belonging to several holidaymakers. Bear in mind that the disabled space must always be given first and foremost to someone who really needs it. In this case, I was that person, but before I’d even edged onto the ramp to board the bus, the owners of the cases were complaining about having to move them. Luckily for me, the driver stood firm, insisting that I had to be allowed on and they would have to do what they could to fit me in. What followed was a series of inch-by-inch shuffles and slides as I did my best to squeeze, but even when it seemed impossible, we managed it – almost certainly defying physics in the process. This was in no small part due to the determination of the driver, who showed a great deal of patience as I lurched into my slot. Indeed, she held the bus at the stop until I was safely seated, and when I needed to get off again ten minutes later, she made a very nerve-wracking departure a whole lot easier. People like her are those I probably don’t give enough credit to when I’m moaning about others, but now is her moment and I wanted to express my thanks for her consideration here – not forgetting the umbrella-holding man either. Your contributions to my day may have been relatively small, but they have not gone unnoticed. My friends and family are there for me on a daily basis, and they should always know how valued they are, but in your own little ways, even you help restore my faith in humanity.

Mason

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