Tag Archives: BBC

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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You Won’t Know If I Don’t Tell You …

BBCI took part in filming for BBC Wales last week.

I’d responded to their question, ‘What Would You Do If You Were Prime Minister?’, as part of their #MyManifesto2017 campaign. How could I resist?

They contacted me, we set up a date and they popped into the office for a chat, cameras in tow.

We discussed a whole range of issues, including disability rights, discrimination, PIP and benefit cuts.

One issue that came up again and again was describing MS at its worst. Having come out of an epic relapse, my longest ever (February to May), it was surprisingly hard to convey just why I looked so weirdly happy and brimming with optimism.

Between takes, I thought about this. Leaving a relapse is like being let out of jail. You’re handed back everything you signed over when you entered this awful state; perhaps not a watch and wallet in a plastic bag, but your innate energy, curiosity, vibrancy.

I found myself constantly saying, ‘no one sees me at my worst’. And you know, they don’t. As the only adult in my household, I shield The Teenager from the majority of a relapse’s effects. I can also work from home, alone. Or in the office, alone. During my endless days off work, I kept myself to myself. Most people were surprised to hear I’d even been through a relapse. It’s because they don’t see me. And I don’t tell them.

Pride? Obstinacy? Or am I just becoming a brilliant MS actress? I’ve had a few emails from you guys saying you know I’m not doing great as I haven’t blogged so much. Absolutely spot on.

I really don’t know why I lock myself away. I do know that one of a relapse’s effects is survival – you just have to get through it, so you put your head down, grit your teeth and keep on keeping on, as much as possible. This doesn’t leave much room for societal niceties – I don’t tend to have friends over, I don’t meet up with friends (my Excuse Bank is extensive) and I don’t do anything except putting what’s left of my diminished energy into getting through a horrendous time, with no idea how long it will last.

Relapses are reflective – you only know how bad they are when you start coming out of one. Part of me wishes the BBC could film me during a relapse but I also know that I wouldn’t have picked up my phone and sent that initial tweet if I was still in Deepest Darkest Relapse Dungeon.

So hopefully I can harness my rising energy levels for something positive. My short film will go live next week, on the telly, radio and internet (I know! Me – in all my glory), and they said they will Photoshop me down to a size 8 and make my chubby cheeks a bit more pointy. (I fear they are joking … )

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