Category Archives: Media

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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A Face For Radio …

micI was both overjoyed and terrified to be invited on to the BBC Radio Wales breakfast programme on Monday.

It would be a wonderful opportunity to speak about the short-fare taxi case I’d been involved in and the discrimination disabled people face, but it would also mean I would be speaking live to an awful lot of people.

A taxi collected me first thing; we passed a pleasant journey until he asked my why I was going to be on the radio. ‘Erm, it’s about a taxi driver. Bit awkward.’

At the BBC, I was issued a pass and told to wait. I spent the time admiring the huge Christmas tree and spotting semi-famous names rushing past me. I was then collected and taken to a holding area, overlooking the reception.

I struck up a conversation with Leanne Wood, the leader of Plaid Cymru, who had held her own alongside Nicola Sturgeon in the Brexit debates over the summer. She was waiting to appear on the ‘Victoria Derbyshire’ programme. She is quite possibly the most down to earth, friendly politician I have ever met, surpassing even the amazing Jens Stoltenberg, alongside whom I had marched with in Oslo in 1994 when Norway voted about whether to join the EU or not.

I was finally collected (the taxi was early) and taken to the radio studio and shown the host through a window. I was talked through what would happen. ‘Are you ready?’ they asked.

Erm, no? I was ushered into the main studio where the host chatted about me being on next. And this was it. I was live.

What happened next is a blur, but I listened back later in the day. I think I covered the main points and also mentioned the tricky issue of employment and MS, a real passion of mine. However, I was thrown a curveball when I was asked if I thought Brexit had made a difference to the level of discrimination disabled people face and whether it was acceptable for parents and children to park in disabled spaces.

After it was over, I had some thumbs-up from the staff, said goodbye and jumped in to a taxi back home. He asked me why I was there, and I replied, ‘oh, I was on the radio.’

‘What about?’

Hmm.

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Justice … At Last

carmarthenRegular readers will know I’ve been involved in a case after being refused a short taxi fare in Carmarthen.

Events took a nasty turn when the taxi driver claimed I had lied, which led to the Carmarthenshire Council Licensing Committee requesting I turn up in person yesterday.

I’m not quite sure what I expected, but it wasn’t what followed. After a sixty mile trip from Cardiff, I was shown around the Council chamber before the Committee members arrived. Ah. It looked just like a court room. I was shown where I would sit – all on my own – and then the long row at the front of the hall where the 15-odd Committee members would take their seats.

I was instructed how to turn my microphone on and off, so only one person could speak at a time. Then I freaked. Just a little, but enough for the nerves to bounce around. The members filed in. The case history was read out, including a defence letter from the taxi driver I hadn’t heard in full before.

I was astounded to hear him brand the entire case a ‘fabrication’, which had caused him no end of distress. According to him, I had merely asked for directions, and being the helpful cabby he was, he duly told me. I then decided not to take a taxi, instead telling him I would walk, ‘as it was a nice day’.

I was asked if I wanted to reply before questioning began, so I posed a rhetorical question – ‘would someone like me, with MS, and extreme heat intolerance as a result, decide to walk up a steep hill with a bag and suitcase on one of the hottest days of the year, after an excruciatingly hot and uncomfortable train journey from Cardiff due to a previous cancellation, so two train-loads of people were crammed in to one and there was no air?’

Then the questioning began and it wasn’t pleasant. I was asked to describe the MS treatment I was on, which I did. I was asked to name the date of my last treatment, which I did, although I have no idea why. I was asked to explain how MS affected my every day life. Until I finally cracked and asked why my MS was being so closely questioned. What on earth did this have to do with a taxi driver refusing a short fare? When taxi drivers are formally bound, on being given a license, to agree to take any fare, no matter what the distance.

CCTV images were described to the members. They show a period of almost a minute when I was talking to the driver. A minute is a very long time to hear, ‘up the hill and take a right’. I was seen fumbling in my bag and was asked what I was doing. I answered that I was pulling out paperwork to show the meeting I was going to, then a card I carry in my wallet, which states that I have MS and may need assistance.

Finally, a statement was read out from the receptionist who was on duty at the hotel I was checking in at. She remembered seeing me arrive in a ‘distressed state’ and she had asked me if I needed help. I had explained to her that I had been refused a taxi. Surely this was irrefutable proof? But. The statement ended by saying that after a couple of minutes I went outside.

One Committee member pounced; ‘And why, if the day was so hot, did you then leave the hotel and go outside?’ He sat back, obviously satisfied with his powers of deduction. I asked him if he knew the hotel. ‘Of course’, he answered. I replied, ‘then you know that just outside there are a whole bunch of trees – a beautiful shaded area. Far cooler out there by the trees than inside the hotel? On such a hot day?’

Which took us back to my MS being on trial, not the driver.

Eventually, after being ushered out of the chamber for the members to debate the outcome, I was called back in. They had ‘no hesitation’ in accepting my evidence and that the driver ‘was made aware of my health problems and that his further refusal amounts to a serious aggravating factor’.

One final note. The Committee wanted to suspend him for three weeks. I argued for one. Why?

As I said to the press yesterday, I am not a vindictive person and this was never about punishing someone financially. If I had done, I would have sunk to the level this driver did, when he concocted a web of lies about me and what actually happened. Would I have been a happier person if he had been deprived of three weeks worth of fares in the run up to Christmas?

No. I would have been happier, back in August, if he had accepted my fare. Failing that, an apology and a deeper understanding would have been nice.

Press about this story – BBC and Wales Online. 

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Script To Screen

spoonfedThere was me, thinking I wouldn’t be able to visit MS Life in London this weekend.

Well, earlier today I was in the middle of re-wiring a plug, drinking a cold soya latte and eating some onion ring crisps when I had a call.

There is to be a screening of Spoon Fed, a short film about MS, starring the wonderful Lesley Sharp (Scott & Bailey) and Joseph Mawle ( Game of Thrones and Birdsong) at MS Life on Saturday.

And me! (I’m the depressed-looking one, shuffling in to the support group and saying ‘hi’ to Joseph before taking a seat).

(That took me seven takes, honestly. This acting malarky is hard).

Would I be able to attend and take part in a question and answer panel afterwards?

Erm, if it’s a choice between plumbing in a bathroom and getting stuck in a serious amount of mud (long story) or swanning off to London, I said yes straight away. The details would sort themselves out.

To be involved in such a great project from start to finish has been brilliant; I met the actors in an intense rehearsal session where I answered every question they had about MS and how it had impacted my life.

The next day, I was at the shoot, watching Lesley Sharp capture my ‘MS walk’ so completely, I welled up. It was me on the screen.

spoon-fed-editedfilm

The production, from start to finish, has been superb. Have a little read here.

If you’re attending MS Life at the weekend, please stop by around 6.45pm on the Saturday.

We’ll be in the main theatre and it would be fantastic to see you!

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Can You Afford To Have MS?

moneyIn the news today, Macmillan Cancer Support reports that most people cannot financially afford to have cancer.

They estimate that the illness costs around £760 per month, leaving the average family with a shortfall of £270 per month, due to increased living costs, such as extra travel, support and loss of earnings.

I could be wrong, but I think this pretty much applies to MS too – definitely so in my case.

Even before diagnosis, I had to drastically cut my working hours and now, although my health has stabilised somewhat, MS still throws plenty of curveballs my way, so much so that I cannot ever see a time I will be working 35 hours a week.

When I was really ill, I relied heavily on expensive ready-meals and takeaways instead of my usual prepared-from-scratch meals. I also took a lot of taxis to hospital and back, unable to cope with the stress of driving, parking, fighting with the ticket machine (the one at my hospital is sadistic) and stumbling to my appointments. I would feel tremendously guilty at not being able to do much with The Teenager so I would entice him with an extra tenner here and there to enjoy himself with his friends. It all added up.

So not only do we have to cope with the devastating emotional loss and bereavement any illness brings, we also face the very real fear of losing our homes, our livelihoods and the ability to look after our children in the way we would wish.

As a single, divorced parent (small violin please), I have no partner to fall back on. I have to earn a wage. That responsibility is frightening and keeps me up at night. I joke that most of my furniture is from Gumtree, but I’m not far wrong. I rummage through charity shop racks, putting aside the money I save so that The Teenager can have a few nice brand-new t-shirts. The cat went on strike when I swapped her food to supermarket own-brand but she learned to love the cheap biscuits, although she brings home more decapitated mice nowadays.

What is the solution? Is there one? If we give up work, we’re scroungers. If we stay in work, many of us are made to feel unwelcome and a ‘burden’, needing too many adjustments.

One thing I must mention though, is that the National Health Service remains free in the UK. I can’t imagine how much I have cost the NHS over the last four years. How would I have afforded the cutting-edge disease modifying drug I had access to, if I was living elsewhere?

But what does the future hold? Will we still have an NHS? What will happen when I’m too old to work but too young to retire? One thing is clear, illness is expensive. Can you afford it?

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