The Unwritten Script

There are certain expectations placed upon you when you suddenly become ‘disabled’.

In my case, I was duly sacked from my job ( I was a ‘liability’), dumped by my partner (the future was too uncertain; I mean, really?) and cast into an almost unrecognisable and vicious world of battles and tribunals.

Simply because I woke up one day with a ‘health problem’.

It’s no wonder the media labels us ‘warriors’, ‘battlers’ and ‘inspirational’. We ‘fight’ (often courageously) and we ‘campaign’ (for the same rights as everyone else).

Mostly, it’s not because we want to, but because we have to.

Tick the disability box on a job application and you’re in a different world (tokenism or the bin). Finally receive a Blue Badge and you fight the public if you ‘look ok’. Tentatively start dating and you face the ‘when do I tell them’ dilemma.

So what happens when you tear up that script? If you don’t accept the DWP can understand the difficulties you face, you’ll face a tribunal. If you don’t accept the nasty stares and comments when you use a Blue Badge, you face confrontations which could spiral (it’s happened).

And not only that, you’re pushed into proving yourself, over and over again. And then told, ‘well, you can do it, so what’s your problem?’

Should you prove you can or you can’t?

I realised this today when I was in work. I was nearly fainting from Uhthoff’s – MS heat intolerance- and I pushed myself to the point of near-collapse, merely to prove a point. I paid for it, ten-fold. Five minutes of pushing led to an hour of recovery. Is it worth it?

Tradition would dictate that, as a disabled person, I should accept the gracious help of our depleted welfare state, stay at home, keep quiet and get on with disappearing. And that’s where the trouble starts.

In our hundreds of thousands, we are refusing to accept the new PIP or ESA guidelines. We are standing up to everyday discrimination – taxis refusing to take us on short journeys, trains refusing to accommodate wheelchairs, and we often make the news (courageous, battling this and that illness, the usual script).

Remember the last General Election? Those endless newspaper double-spreads about how this or that Government could affect your voting choice? Was there a disabled person in amongst them? Probably not.

In fact, I was so angered at this, I contacted the BBC and made a short film asking why not one politician addressed how 11 million disabled people in the UK could be affected. Of course, nothing changed.

And still it continues, bar a few extreme (but sadly common) media-highlighted examples. Especially if the person is famous or has a lively social-media profile.

So where do we go from here? How can we persuade the Government, and the public, that we have a voice? That we can do remarkable things, just like everyone else? That we’re not ‘special’, ‘inspiring’ or any other insipid, patronising label that can be stuck on us as a gift from above?

I’d love to hear what you think …

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4 thoughts on “The Unwritten Script

  1. The government and some people in the general public don’t want any disabled person to have a voice. Either because they then have to question what they believe disability to be, dont care at all, or it doesn’t effect them personally. or the one I have read and hear a lot why should they get special treatment? and this was over disabled parking….

    I find it so patronising when people say I am brave for going to uni, for getting a degree and now going onto a masters. I dont get the brave thing, i am not doing anything that another person couldn’t try to do. it does seem disability is only a “good” thing when we are doing something, finishing a goal. never mind anyone else could do the same, but because we are disabled we are suddenly very visible, but only when it is to encourage someone “able” bodied. then we have a voice but not for things that really effect the disabled (sorry havent slept, im in a ramlby mood lol)

    • stumbling in flats says:

      Well said!! It really is a complex matter – we seem to be visible only when it suits (depending on the argument).
      It is totally patronising to be told you’re brave to go to Uni! It demeans your very real achievement. X

  2. Joan (Devon) says:

    Are you a alright Barbara? Or are you suffering again?

    • stumbling in flats says:

      Hi there!
      I’m not too bad, thanks. Just in constant pain with the hernia – consultation is not until 31st August, so no idea when the operation will be 🙁
      Hope you’re good? X

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