Tag Archives: general election

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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You Don’t Matter …

marchThere are 13 million disabled people in the UK, with 89% of them eligible to vote in the upcoming General Election.

13 million.

Have you heard any of the political parties address us and our needs directly during the election campaign?

Have you been overwhelmed with election promises about rolling back the savage cuts and stigma we have faced since the recession began way back in 2008?

Of course you haven’t. We don’t matter. Our purpose is purely as a scapegoat – when the chips are down, blame the people least likely to be able to fight back. It’s cheap but brutally effective. According to the tabloid newspapers, we all drive top-of-the-range free cars, doss around at home, unwilling to work and more than happy to leech off the state.

Yet this election is central to our future and we need to make our voices heard. A few facts:

  • 1 in 5 disabled people struggle to pay for food.
  • 1 in 6 wear a coat indoors as they are unable to afford heating.
  • The number of physically disabled people deemed homeless has increased almost 50% between 2010 and 2016.
  • Motability cars are being removed from disabled people at the rate of 700 a week – or 35,000 a year – due to reassessment from DLA to PIP.
  • 85% of people with MS will be unemployed within 10 years of diagnosis.

If I hear (No Saint) Theresa May appeal once more to ‘ordinary hard-working people’, I will scream. What is ordinary? Normal? What if I’m disabled and still work hard? Well, Theresa, I guess that makes me extraordinary, given the almost insurmountable barriers in my way.

At the last general election, I cornered one of our MP-hopefuls in the street as he was campaigning. I politely asked him what he was going to do about the disabled parking abuses rife in this area. He couldn’t get away quick enough. It’s a non-problem. I challenged someone who had parked, without a blue badge, in a supermarket car park on Monday at around 8am. His reply? ‘Disabled people don’t get up early, what’s your problem? Now **** off’.

It seems we face a battle on two fronts – being ignored by all the main political parties and the increasing hostility by the general public (whipped up to almost hysterical levels by the media, owned by billionaire political party donors).

I despair. Frankly, I’m worried.

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