I have just found this :) I wrote it when I was at a higher percentage than now (obviously), when I was attempting to complete my Social Work degree. Thought people might like to read it. Here we go......
Disability has a stigma attached to it. Fact. No matter what new policies the government brings out this week, no matter how much people try not to discriminate it still does. This, if you look hard enough is obvious; you merely have to look in the right places, from the right perspective.
Anyone who has ever been in a wheelchair, even to muck around, or as part of a task with the objective of helping one sympathise with the disabled, will know how heavy they are and how hard they can be to push alone. Now add to that uneven pavements that slope towards the road, kerbs, cars, people, stairs, lifts that don't work, automatic doors that don't open, lack of ramps and having to use a separate entrance from "normal" people. The embarrassment of boarding public transport, the way everything screams to a halt as you get on, with employees and often complete strangers assisting you whilst everyone else stares. The way it makes you feel. You are wasting everyone’s time.
The people who stare at you do so with blatant curiosity, which turns into open mouthed staring when the reason you are confined to a wheelchair is not immediately apparent. The looks of pity or revulsion are harder to handle.
The world is made for able-bodied people. The disabled among us merely struggle to cope.
Welcome to my world.
It is a common misconception that all people who use wheelchairs can't walk. This is not true. Many in fact can walk a short way and use a wheelchair to allow them to do things that other people view as normal. Going out for the day, getting groceries, going shopping. To these people a wheelchair represents freedom, as constricted as it may be it is wholly preferable to the alternative.
I am one of those people that use a wheelchair and can walk. Don't judge. It is for this reason entirely that one sketch from Little Britain is the bane of my existence.
M.E. does not mean I am confined to a wheelchair permanently, in fact quite the opposite. At my current percentage I can walk through the world as a normal person, in pain, tired but alive. I can go to university for 2 days a week and I can work my job as a barmaid for 6 hours (only ever 3 at a time). I can get on and off the bus and walk the short distances I need to. I can cope.
But what my friends and colleagues don't see is the rest of the time when I'm exhausted and in bed. When my legs and arms ache, when I'm stuck in the bath, when I can't form sentences better than a three year old and I can't remember how to make a cup of tea. They don't see the times where I wander around one floor of my house, unable to reach the other, desperately holding on to anything to keep me upright. They don't see me rigorously planning rest periods and medication to achieve the small amount of normality I have succeeded in establishing.
I am impossible to please. Most of the time I don't want anyone to think I'm ill, I want them to believe that I am just another boring, normal, average person. But other times, when I'm feeling awful and really need that seat on the bus I want a sign explaining everything. I don't want to talk about my disease but I want people to understand, to be aware, to make an effort. I don't want them to ask if I'm ok, or how I'm feeling today, but I want them to show concern. I am tired of lying. "I'm ok" or "fine, much better thanks!". But people wouldn't want to hear the truth, "shit, same as always but thanks anyway", that grows tiresome.
This is me, not M.E. I want people to understand.
