He Could Be So Good For Me

The central character that I created for Excludable was one Jim Rossiter, originally named Jake. He was “born” on 30 March 2013, the day I started writing, and from the outset he was intended to be an alter ego in the truest sense of the word. Like me, he used a wheelchair (although I never specified his disability) and tended not to be very forthcoming towards those around him, because he was always afraid of being a nuisance. He could be dishevelled at times, and was prone to overthinking and the occasional social faux pas. Despite these shared qualities, however, I was very careful not to make Excludable a script all about me. When somebody once asked me if it was, I quickly clarified that it was only about someone like me – a relatable character in whom I could place some of my most closely-held thoughts and feelings without it being obvious they were mine.

It seemed to work pretty well. Jim became not only a reliable fictional confidant, but also a decent testing ground for new ideas I considered putting into his story. I spent so much time thinking about Jim and his progression through Excludable that he became almost like an imaginary friend, albeit a more useful one. If something particularly thought-provoking happened in my real life, I might find myself thinking of my new project: “Jim could do that”, I would say to myself. It took a while to piece something together, as you all know, but I knew the waiting and endless thought would pay off in the end, and indeed it did. I am the biggest critic of my own writing, and especially of this, but at least I’d finished it. Some of my rawest and most personal emotions had manifested themselves creatively onto paper, which I would now have to hand whenever I wanted to develop it. And it might never have seen the light of day if I didn’t have Jim at the centre of it – a character perfectly placed to finally show me, after so much time spent thinking rather than doing, what I was actually capable of completing. All that’s left now is for you all to meet him one day.

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.

Em

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