“The individual is the expert”

I pride myself on my ability to manage my various disabilities. I have spent years coming to terms with the fact that I have them and that there not going anywhere. After realising this fact I have moved away from getting angry and frustrate that I am ‘worse off’ than others and have come to realise that I am just as good (if not better) than everyone else I just have to do things differently and manage my behaviour in order to negate the negative consequences of my disabilities.

I’m going to share  two everyday situations with you where I failed at managing my disabilities so that you can understand the importance of self management on my everyday life and my ability to get on with things.

Bear with me as these aren’t disabilities I’ve spoken about in a public forum before.

So the first issue doesn’t tend to impact on me negatively with any regularity and relates to my dyspraxia. I’m clumsy, really clumsy: I tend to walk into people and things and am good at injuring myself.  All of this fits under the label of dyspraxia; however, I very rarely tend to talk about it as I don’t often feel bogged down by it and only on occasion does it really negatively impinge upon my life. In short, dyspraxia is an issue I have with hand-eye coordination, the issue being that I have none.

Now normally, for me, the symptoms of being dyspraxic are things I am aware about and can mitigate in a way that it becomes a bit of a non-issue, for example I don’t often (willingly) engage in activities that will extenuate/demonstrate it or when I am aware that they are happening I can pull it off as a bit of a joke about how rubbish I am at them e.g. ‘haha I can’t hit the ball/run/ ride a bike’.

Very rarely does this negatively impact on me. I am always a bit ditsy/fall over/ struggle with walking in a straight line – this is why I fail at most sports but swimming (you can’t fall over in a swimming pool). However, I do have occasions when this disability can get in the way and it’s always when I’m not prepared and things are sprung on me: there have been a few times recently that this has been the case. One of which was at the London TUC demo trying to outrun a police kettle (which resulted in being both kettled and hit in the face with a police shield); the other being in an icebreaker game. I’m going to go with the icebreaker example as I think most people will be able to empathise.

So this game involved a ball. Immediately I’m dubious: unless the ball is going to remain stationary or will be rolled along the floor, I feel I’m going to fail at whatever thrilling task is set to us. So usually this kind of task wouldn’t be too bad, I’d drop the ball and make a joke or really concentrate on the situation and let people know I can’t catch. As a side note people tend to use quite soft balls in tasks like this not bloody big cricket balls. Now at the time I was a bit out of it, I wasn’t feeling very well and was with a group of people I didn’t know too well. In short I wasn’t really paying attention, I didn’t prepare myself for the task at hand and ended up being hit with the ball twice and dropping it once. So all in all not the best of impressions! Now it’s not dropping the ball or being unable to catch it that’s my problem. I couldn’t care less whether I could or couldn’t catch a ball, thankfully for me (and much to my mother’s despair) I’m not a sporty or competitive person so not being able to engage in activities like this doesn’t really bother me that much. What does upset me is the inability to manage the effects of not being able to catch the ball. I was much more angry at myself about not putting in the necessary precautions to reduce the harmful effect of the situation, and in this situation the negative effect was dented pride, self esteem and a bruise. At the age of 24 in a room full of 20 odd people it’s quite embarrassing to not be able to do what most 5 year olds can do and catch a ball (it’s also quite painful when it hits you in the chest!) without the usual defence of making a comical and witty joke about the whole situation.

My second situation refers to what I call my ‘Dizzy Spells’. Since the age of about 15 I’ve had issues with balance. Apparently it relates to something in my ears, and is akin to Meniere’s disease. There are three main symptoms: Tinnitus, which is that buzzy sound you get after you’ve been stood next to a speaker for too long, but without the speaker; the second is fullness of head which is a weird sensation not unlike putting your thumb in your mouth and blowing really hard; the third symptom is the dizzy spells. These are by far the worse and most detrimental. At the moment the fullness of head and tinnitus don’t really need to be managed; I don’t get it too regularly and when I do it isn’t so bad that it disrupts me (however for others that isn’t always the case and tinnitus can be a really debilitating disability). The dizzy spells, on the other hand, are a pain in the arse. Have you ever been so drunk that when you close your eyes the whole room spins and you feel like you’re going to be sick? It is exactly that sensation but with my eyes open and no alcohol. Once I get a dizzy spell there is nothing I can do to stop or alleviate it. They wipe me out and mean that for an hour or so I can’t do anything. Although it is pretty much impossible to manage my dizzy spells, when I get them I’m pretty good at stopping myself getting them. This is harder than it sounds because there are so many things that set them off. Usually anything that involves moving my head too fast, spinning or things that trick my head into thinking it’s moving are the culprits. When I first started getting them when I was about 15, crossing roads was a killer: for about two years every time I crossed a road I would get them and in some cases they would make me fall over/faint. It wasn’t until I realised that I could keep track of what set them off and began to see patterns that I realised that the checking for cars bit of crossing a road when you look left, right, left again was the issue. I did it too fast and set me off; I’ve now learnt that I can cross roads fine I just have to look left and right much slower and remember not to jerk my head around to much. Merry-go-rounds and roller coasters are a write off; I can’t dance if I’m going to be spun round; strobe lights are a pain (they trick my head into thinking I’m moving); cars, buses and trains are a nightmare if I can’t face forward and even then I have to be careful with things flashing past the window; I can’t do boats, pretty much the list is endless and I find things every week that I can add to it. Normally I’m very good at remembering and avoiding things that I know give me a dizzy spell (once you’ve had one you don’t want it again). The problem comes when I don’t know it’s going to give me a dizzy spell. The annoying thing is that after being dizzy I look back and think ‘that was always probably going to set me off, why did I do it?’. The situation I found myself in today when I had one was holding the phone against my shoulder (no hands) and pottering around the house. The sensation of having my head at a sideways angle and walking was too much and that was it: 30 minutes of sitting very still, taking deep breaths, with my eyes closed and waiting for the horrible sensation to pass.

I suppose what I’m trying to demonstrate to you in a very waffly way is that being able to correctly manage my disabilities enables and empowers me to be able to live with them. They may be horrible at times but that’s not all the time and having the ability to control them (at least for the most part) is what allows me to carry on. Now I must stress at this point that (as I hope this website will show you)  everyone is different and everyone will experience their own disabilities in different ways. Some people will have a much harder time managing their own disabilities, and for others this might be near impossible;  some may be starting out on the path to learning what makes living with their disability easier and others may not accept the idea of self management but instead may be waiting for a cure. Everyone is different and only the individual is expert in their own needs.

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