Forever waiting

On average, we apparently spend a third of our life asleep, a quarter of it working and the rest being domestic, leisurely and social. While sitting there, waiting, it dawned on me that a pie chart of how disabled people spend their time would look very different from the norm because of our differing needs and reliance on mechanics, technology and 'special' services.

So let me draw up this pie chart. Most disabled people spend a large percentage of their time asleep but dare I quantify the amount of time spent waiting for a personal assistant to turn up to help me get to bed in the first place? Or to get up or go to the loo or get dressed?

Indeed, how many hours have I given over to recruiting personal assistants, training them and even having to sack them? I dread to think.

How else does crip time differ from norm time? Well, I have calculated that I spent at least 20% of last year filling in forms - that might be a slight exaggeration but when faced with a 48 page tome, it’s certainly how it feels. I realise that everyone has to deal with petty bureaucracy but when you’re disabled, you have much more of it and you have the additional requirement of listing every medical condition you have and have ever had - in latin, in triplicate and in alphabetical order.

A huge amount of time, probably 25%, is spent trying to get from A-B. Not actually travelling you understand, just trying to. I’ve spent umpteen hours waiting for the taxi operator to pick up the phone, more hours on hold, even more waiting for an accessible vehicle to become available because: “They’re all busy on the school / hospital run”. What? At 9 pm? Hmmm. And if I decide to catch a bus instead? I wait for a bus with a ramp to come along. I wait for a bus with a ramp that works to come along. I wait for a bus with a ramp that works, and that actually stops, to come along.

Excuse me as I continue to add to my list: Waiting for someone (most likely a non-disabled person) to come out of the accessible toilet. Waiting for a bar manager to find a key to activate the accessible lift. Waiting for everyone else to get off the train before they bring the ramp. Waiting in the ‘special’ refuge during the fire drill.

I'm beginning to see red the more I think about it! For us wheelchair users at least, it seems that the biggest piece in the pie chart of your life will be dedicated to ‘waiting’.

But perhaps I’m not being fair? There are times in life when being disabled means we don’t have to wait around like everyone else. An often used example is theme parks where we’re allowed to bypass the queues. When we fly, we’re usually pre-boarded along with babies and older people. But does the advantage of not having to queue for a ride on a rollercoaster really compensate for all the waiting around we have to do in our regular daily lives? And whilst we’re allowed to board the plane first, we usually have to disembark last - I guess that’s the karma of waiting.

With all this enforced thinking time, I should have learnt tolerance and patience over the years ... but I haven't. What I have mastered, however, is being very good at appearing to be so. Hanging around has taught me to be good at smiling sweetly, looking as though everything is absolutely fine thank you. But no, in Liz’s pie, at least 50% of my time is spent looking sweet on the outside whilst inside being fit to burst, singing repeated chorus’ of 'Why are we waiting' and wanting to shove a bloomin' pie in someone's bloomin' face. Ahem.