Organ Donation – a Rant

I’ll be straight with you from the start. I’m a great believer in organ donation. I carry two donor cards, the general one that many Brits have – and an extra one for the MS Tissue Bank. I’ve blogged before about this and you can read more here:

What got my goat this week was a studio guest on the radio, saying she didn’t want her organs to be used after her death because it’s her body and “The Government” doesn’t have any right to take bits of it off her. (The Welsh Assembly Government has passed legislation for an opt-out system here in Wales.)

Aside from the fact that everyone alive today has benefited to some degree from research carried out on donated bodies / organs, I wondered how she’s react if she needed an organ transplant. And that got me thinking even further…

What if we had a single register for organ donations – it doesn’t even matter whether it’s opt-in or opt-out. But only those on the register would be eligible for organ donations. Or transplants. So a person could only receive a donated organ if they were prepared to donate their own after death.

Let’s rule that there’s a two-year probationary period, too. So you’ve got to be on the register for twenty-four months before you could receive a donated organ. Just in case anyone tried to cheat the system.

That would be fair, wouldn’t it?

Heat, Fatigue and Victorian Clothing

The UK has just experienced the hottest July in years and everyone’s really enjoying the summery weather.

Except those of us who aren’t.

Most people with neurological disorders find their symptoms are exacerbated by heat. In other words, we’re the grumpy ones who complain it’s too hot when everyone else is hunting for skimpy clothing and slapping on the factor 15. Or in my case, sweltering under heavy clothes to keep the rays off my vampiric skin that burns at the first touch of sunlight.

MSers commonly list fatigue as their worst symptom. It’s also the hardest
to explain. It isn’t “feeling a bit tired” or “tiring easily” – it’s more like something suddenly stealing all your energy without warning and leaving you unable to do anything. No, getting more sleep doesn’t prevent it, not does taking things easy for a few days. And it usually gets worse when we’re too warm. One of my MonSter’s favourite tricks is to lie in wait while I cook dinner and pounce so I’m too fatigued to lift the fork to my mouth. It’s debilitating, annoying and can be downright embarrassing.
So why do I agree to attend an event in Victorian-style clothing on a hot day? It could be that I don’t want to let the organiser down. Or it could be plain old-fashioned masochism. Or maybe it’s because I’m too bl##dy-minded to give in to the MonSter today.

Whatever the reason, looking forward to seeing some more lunatics in Steampunk attire at the Punknic. And I’ll try not to be too grumpy!

BTW. Chrystal Heart is at the reduced price of £2.99 for the weekend. (Amazon willing!)
Click Here

Discrimination by Any Other Name…

… would still smell as foul.

Okay, this is a rant. I’ve been trying to book theatre seats. I was pleased to find that I can book them through my favourite cashback website, giving me a small but handy discount on the price. So I clicked through to the booking website, gave them my contact details, told them what we’d like to see, which performance and everything. The website offered me a few possible seats, but of course they’re not accessible. I hunted for the “wheelchair seat” option and found nothing. Eventually, I scrolled down the screen and spotted a sidenote which says, “To request accessible seating or wheelchair access, please call our team on…”. I swore quietly and rang the number. Two hours of patronising messages later I was still ringing the number. I think it was answered at one point – I’m sure I heard the phone being picked up – but then it was dropped and the line went dead. Eventually I got through to a person, who continued the theme of patronising me – insisting that it’s not possible to book wheelchair spaces online because the theatres have to speak to the wheelchair user to make sure they have all the assistance they need and everyone’s needs are different. I asked for her name and got an extremely patronising response. She did the old “talk loudly and slowly” thing and told me she wasn’t being patronising, that I had an attitude problem. Then she told me that this as the wrong number (despite their website’s statement) and gave me the premium rate number I have to call.

I called the number she’d given me and quickly got through to a very pleasant young lady, who checked and informed me that the theatre only has one wheelchair space and it’s already booked for the performance I wanted. So it goes. But we had a nice chat; I told her about the rudeness I’d experienced at the hands of their agents and she told me their justification for insisting on speaking to someone on the phone to make sure they took care of their specific needs in each case.

Now, I may be biased, but I call this discrimination. If I wanted “normal” seats I could book them online. It would take a couple of minutes to click through the relevant web pages and buy them. But because I need to arrive in a wheelchair, I have to phone both the booking company and then the theatre to make the arrangements. I would have to give my credit card details over the phone (which I hate doing – you don’t have the security you would online), waste half my day and don’t even get cashback on the purchase. I’ve already received one sales email from the agents – and I’m not even allowed to book seats through their website!

I understand that wheelchair spaces are at a premium in theatres, especially in the older ones that are minimally accessible. But is it realistic to effectively add to the cost of booking in this way? I spent two and a half hours to find out there was no suitable seat available – do I have to do this for every performance until I find one I can attend?

And if they’re so keen to speak to me in person rather than letting me book online, why isn’t the accessibility assistance number a normal-rate geographical one? Or even a freefone number?