Dec 08 2016
4 Comments
Media

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.

Tagged , , , , ,
Dec 04 2016
6 Comments
Daily Life

If You Can’t See It …

invisibleOne point amongst many brought up during the Taxi Driver Case, is that invisible illnesses can be tricky.

That’s not to say a more visible form of MS than mine is any easier – far from it according to the large amount of emails I’ve received, in which people have told me taxis simply drive past them when they see a wheelchair or walking sticks.

It just seems harder to ‘prove’ you have a disability if, at first glance, there’s nothing ‘wrong’ with you. However, some place the number of people with chronic conditions which could be deemed invisible as high as 96%. Whether or not that is true, it is indicative that there is more understanding needed.

This can take a tragic turn, as in the case of Brian Holmes, who was killed with a single punch in 2013 after another man took exception to him looking ‘like he could walk’ when parked in a disabled space at a supermarket. Little did he know, he was the driver for his wife – who was disabled, and had a blue badge – and who was shopping at the time. What he also didn’t know was that Brian was days away from an all-clear from cancer.

Cases like this show just how difficult it can be to judge who is disabled or not. On the flip side, I live near a busy shopping area; on weekdays, parents park in disabled spaces as they are one or two metres closer to the school than the plentiful other spaces, and ‘what’s the harm?’. On weekends, car after car parks in the supermarket disabled spaces, as they are ‘just popping in, what’s the problem?’ In the morning, builders vans park there, as ‘disabled people are lazy and don’t have to get up early like we do’.

These quotes are real; I’ve spoken to these people. They become aggressive, threatening and abusive. Such are the feelings disabled parking can arouse. Last year I called the school where the majority of parents took their children to. I spoke to the headmaster, who told me in no uncertain terms, ‘it’s not my problem’. I have also raised the point with my MP, who said he would look in to it.

Disabled parking spaces are there for more than convenience. If you are ill and finding it difficult to get out, it can be a smidgen of hope that after the palaver of getting ready to go out, you can just about be guaranteed to find a space. Granted, this is not always the case, but the hope is there. It’s psychological, apart from anything else health-wise.

It’s all too easy to languish at home, constricted by health, lack of parking and society’s attitude towards you.

You make people uncomfortable. And that’s all the more reason to be seen.

Tagged , , , ,
Dec 02 2016
18 Comments
Media

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. 

Tagged , , , , ,
Nov 28 2016
12 Comments
The Teenager

How We Live Today

how-we-live-todayPeople say the strangest things when you first have a serious illness.

Haven’t we all been promised the earth by those who matter (I’ll be there, just ask). And the moon and sun.

It must be bad?

However, with The Teenager having limited contact with his dad this year (not my choice), raising him has been tough at times, but infinitely rewarding.

Since MS crashed into our lives in 2011, we’ve both altered our perceptions immeasurably. Gone were the  days when I was the parent who did everything. I now needed help.

Thankfully, my friends were on hand. We got through that dreadful time and came through the other side older and wiser.

And now The Teenager is on the threshold of 18.

As in common with any parent of a teenager, I am still failing. Of course. And he has had more than his fair share of challenges – as the single child of a single parent with a serious illness, he has had no one to share the long evenings (and my MS) with. If you don’t count the yells coming from his bedroom, when he has ten kids in there, all playing the same game.

I’ve been reduced to a cash-dispenser and provider of food. And that’s fine. It’s not the fish fingers that worry me, it’s the MS symptoms and how to work them around an Exploring Teenager.

Fatigue. A problem. Before sixth form, I set an alarm, dossing on the sofa and waking up in time for him to come back from school. It’s not so easy now he’s doing his A Levels. He returns at odd hours, shocked at me sleeping.

Nerve pain. A problem. I’m useless after 5pm. I walk funny. I could be seen as embarrassing.

Speech. My very first symptom. I still get tangled up in English when I’m tired, speaking a mish-mash of languages, the hangover of being tri-lingual.

So how do we live now? Precariously. We are forever on watch for the next relapse. I work, study and look after our house and The Teenager. I am trying my very best but the best is often not enough.

I remember saying, back in 2011, that all I wanted was to get The Teenager to University.

I might just manage it.

Tagged , , , ,
Nov 24 2016
Leave a comment
Emotions

Reframing The ‘F’ Word …

fattyIt’s weird.

I’m more likely to define myself as ‘fat’ than as ‘living with MS’.

Huh?

I’ve struggled with weight gain since I was diagnosed back in 2012 – through a combination of medication, thyroid, stress and comfort eating.

I’m not going to lie, I put my chubby hands up to the last one.

I had a wonderful conversation with a friend on Monday and mentioned that I tell everyone I’m fat, almost as a matter of course. Why do I do this? I mean, they can see it; I probably fill their entire periphery vision in one fell swoop. I’m kinda hard to miss.

She asked me why I did this and I really had no explanation other than I’m so unused to being this size – I’m the biggest I’ve ever been – it’s almost a novelty. A curiosity. To use an unfortunate phrase, is it about getting the elephant in the room out the way?

MS is such a ‘normal’ part of my life now, but being this size isn’t.

I’ve tried to embrace this new body, but found out I really didn’t want to. And I don’t understand this. I’ve met incredible women over the years, through my travels and in the UK, who were far larger than me but happier. Celebrating and indulging wholeheartedly in life in a way I can’t imagine.

Don’t get me wrong, I’m not unhappy, just miffed. More so as I have beautiful clothes hanging in my wardrobe that look a bit silly on me. But do they? Maybe I should stand a bit taller in the mirror and not give a damn about the spare tyre(s) and let my character, my inner essence, do the talking? Isn’t that what life is all about?

I watched an eye-opening episode of ‘First Dates’ this morning (I’m always up early and have ages to fill before work). There was a lovely guy, a tailor on Savile Row. He’d lost a lot of weight a couple of years before but was still conscious and a little overweight. The date went well although he mentioned his weight at every opportunity and you could see his lack of self esteem.

The result? His date thought he was wonderful, but his confidence issues were a turn off.

A great insight. But it got me worried about my potential dating advert, which was already dire:

40-something, divorced, one Teenager, one cat, have an incurable progressive illness – WLTM similar

And fat?

Tagged , , , , ,
← Older posts
Newer posts →