Category Archives: Media

Join The #KickMS Movement!

AliceCan Do Multiple Sclerosis, a non-profit that provides health education programs for families with MS, launched their annual, online campaign that encourages people with MS, as well as their friends and supporters, to share how they #KickMS during September’s Can Do Month celebration.

The Can Do Month campaign honors and remembers the legacy of Can Do MS founder and Olympic ski medalist, Jimmie Heuga, on his birthday, September 22.

Jimmie pioneered the philosophy of health through exercise and nutrition, enabling those with MS to lead healthier lives.

“My father kicked MS by focusing on what he could do rather than what he could not,” says Blaze Heuga, Jimmie’s son. “Because of this, he was able to go beyond perceived limitations to live his best life with MS and empower thousands of others to do the same.”

The community can celebrate Jimmie’s can do spirit and inspire others by sharing how they live passionately through a photo, video, or mantra. #KickMS by running, painting, camping, laughing, cooking, travelling, loving, or anything you can do!

There are three easy ways to share how you #KickMS:

  • Submit your photo or video online at mscando.org/candomonth
  • Share your photo or video on the Can Do MS Facebook page using the hashtag #KickMS
  • Share your photo or video on your personal Instagram or Twitter account using the hashtag #KickMS (post must be set to public)
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The One Where I (Might) Dress Up As A Christmas Tree …

treeHere’s the thing.

I really, really want to fund-raise for MS.

But I don’t want to skydive, fire-walk, be silent for a day, climb a mountain or zip-wire. I’m not brave enough (or quiet enough).

So instead, I’ve decided to dress up as a wobbly Christmas tree and record a song.

My partner-in-crime is Dan, a fellow MS Society Council member. Every time we get together, we rework Christmas lyrics into songs about MS as, handily, the letters M and S both appear in ‘Christmas’. Bear with.

All we have to work out is where to record the song, who can record us for a short accompanying video and how we can unleash this on the public.

The filming part should be easy – I’ll be a Christmas tree and Dan can be a reindeer and we can lob snowballs and tinsel at each other (from the comfort of chairs, natch). Or we can be really cheesy and wear matching knitted Christmas sweaters and sit by a roaring log fire, toasting marshmallows and drinking eggnog. Sort of Val Doonican-esque.

And now it’s over to you guys. What do you think? Should I embarrass myself (and The Teenager) for life?

Can we raise vital funds and still keep our dignity intact?

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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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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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