Fake it till you make it

You’ve seen my pictures.  I’m a wheelie.  I’m disabled.  I’m a cripple.  I’m whatever you want to call me (I sometimes call myself a cripple right away so the word has no power when people try to insult me with it) but it better not be wheelchair bound.  I’m not bound to it with ropes and chains.  It’s not my life partner.  I exist without it.

Society in general, and there are an increasing number of exceptions to the rule, seems to see a person in a wheelchair and assume they can’t and shouldn’t be allowed to get out of the chair.  A lot of people can and do, yet where-ever I go I’m always expected to stay in that contraption.  Weirdly, if I sit in a regular seat anywhere, even if my wheelchair is right next to me it is never thought to be mine.  That’s because I don’t look disabled.  I mean, how the hell do you look disabled?  Am I meant to go Holocaust style and wear a special badge?  Many years ago, I transferred into a regular minibus seat to make a 90 minute journey more comfortable.  At my destination, somebody poked their head in and asked if I was getting off.  I answered that I was waiting for my wheelchair to be unloaded and brought round only to be met by a shocked expression and ‘you don’t look like you need it’.  Sorry to disappoint.  Unless you saw me trying to stand up, you wouldn’t think I needed a wheelchair when I’m not in it.  Unless you saw him trying to read the paper, you wouldn’t think my dad needs glasses.  You wouldn’t think my friend needs insulin if you hadn’t seen her before lunch.  My point is that nobody really looks like they need certain things and you wouldn’t know without that visual clue of a chair, spectacles, a syringe.

Around that time, I went for a meal with my personal assistant at the time where I met one of her friends.  Everything was fine until we started to get ready to go and the friend asked my assistant if she was sure I was really disabled because she saw my legs move.  It was annoying because she didn’t talk to me about her confusion.  Again, though, just because this woman had only seen me in my wheelchair, she assumed that that was all there was to me.  Irritated as that made me, you cannot stop people making assumptions and judgements.  You can tape their mouths shut so they keep it to themselves because she basically accused me of faking!  Why?  What could I possibly have to gain from it?

I have been asked to my face if I’m really disabled or just using the chair because it makes things easier.  I’ve tried to tell people I have an incurable condition and then recommended some homeopathic nonsense because they know better than some of the top neurologists and geneticists.  I’ve recited the name of my condition and been treated like it’s a lie because Joe Pub.lic has never heard of it and therefore it can’t be real.

So… for the record:

  • I have an actual disability called AOA2
  • I use a wheelchair because I can’t walk or stand
  • I’m not paralysed and can still move
  • I will transfer out of my chair when I can
  • I don’t ‘look’ disabled

Just a checklist in case you ever meet me and – oh, hang on –

  • I am at the correct height to smash your ankles if you offend me

Right.  All done.

3 thoughts on “Fake it till you make it

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