Funky Mango's Musings

A week or so back, I was at one of the ceremonies where the handover of the Paralympics from Beijing to London was being celebrated.

(Incidentally...wow, didn't we do well in Beijing? Second in the medal table, with an amazing 42 golds among our total 102 medals!)

Anyway, back to this ceremony. After all the ceremonial was over, the day consisted of schoolkids - some disabled, some able-bodied - trying out different events. The events on offer included shot, javelin, rowing, and boccia. Bo-what? I hear you ask...I'll come to that.

Before I took poorly, I used to throw the hammer. Not that I was ever that good, but I've always had a hankering to get back to it - or some sort of throw anyway. So in the Paralympics I was watching the discus, the javelin, and thinking hmmmmm

But realistically...it ain't gonna happen. Throws need strength and stamina, two qualities I just don't have any more (thanks MS!).

But I still wanted some sort of sporting outlet. So at lunchtime at this event, I managed to have a go at boccia.

Boccia is a sport with similarities to boules or pétanque. It was originally designed to be played by people with cerebral palsy, but is now played by anyone. The classification system means that people with very severe disabilities are able to compete, as well as less severely disabled people. Most importantly from my point of view, one of the classifications specifically mentions MS!

The game involves throwing coloured balls to get as near as possible to a jack. Not as much emphasis on strength and stamina, but lots of skill and strategy. Obviously at first my balls were going all over the place, but soon I was getting pretty close into the jack...I enjoyed myself! So tomorrow I'm heading off to a boccia club to see if I want to take it further.

Four years till London 2012...who knows what could happen by then

1. Traffic wardens won't give you a parking ticket because they feel sorry for you.

2. No one expects you to be clever.

3. If you don't want to visit someone, you can just say, "Sorry, I can't get any transport".

4. Doctors are struck dumb when faced with your very different body to examine.

5. You can wear funny clothes and people will still tell you that you look nice.

6. Using your wheelchair, you can deliberately run over people you don't like - and they'll feel obliged to apologise to you!

7. Social workers will eventually give up on you because, after all, you are a lost cause.

8. You can spill your food in a restaurant and everyone will ignore it because they expect it of you.

9. You don't have to get the drinks in when at the pub, since no one expects you to be rich.

10. You can have sex any time you like because no one thinks you can do it anyway!

By Rosie Ballard, from BBC Ouch

1. Twenty-three wedding cakes were made for the nuptials of Charles and Diana.

2. That third brake light, the one in the rear window, is called a chimsil.

3. Aircraft oxygen systems have just about 12 minutes worth of reserves.

4. And when deployed, the oxygen flow can be so light that passengers can be confused into thinking something is wrong, and pulling oxygen masks from the ceiling.

5. Sticks and stones may break your bones, but words can be even more painful.

6. Most people have an above average number of feet.

7. Shetland is the fattest part of the UK.

8. There are more than 150 books with the "...before you die" premise in their titles.

9. Life really does imitate art.

10. Almost a third of BT payphones have been removed in the past six years. (Artwork by Banksy)

From the BBC

An interesting, and very tragic, case.

This is Kasia Ber in 2005, aged 17.

One day, Kasia had had breathing problems and palpitations at school. One of the teachers took her to her GP. She had tests there over the next few days, but asked both the GP and her teachers not to tell her parents what had happened, in case they worried.

Two weeks later, Kasia died of Sudden Adult Death Syndrome, often known as sudden cardiac death. It's thought that her mobile phone alarm caused a heart arrhythmia called Long QT Syndrome.

Kasia's parents have taken no action until now, waiting until her brother could finish at the same school. Now he's left, they're suing the school, claiming they should have been notified that Kasia had been unwell, even against her wishes.

The college (and the GP) were proceeding on the basis that Kasia had Gillick competence.

Victoria Gillick was an activist who ran a campaign against a policy allowing doctors to prescribe contraception to girls under sixteen without their parents' consent. In a court case she sought a declaration that such a policy would be illegal because it would amount to encouraging sex with a minor.

The House of Lords' decision focused on the issue of consent: Lord Scarman's test is generally considered to be the test of 'Gillick competency'. He required that a child could consent if they fully understood the medical treatment that is proposed:

As a matter of Law the parental right to determine whether or not their minor child below the age of sixteen will have medical treatment terminates if and when the child achieves sufficient understanding and intelligence to understand fully what is proposed.
Lord Scarman

Gillick competence is achieved by every child at a different age, and may be achieved at different ages for different issues. Kasia was 17 and studying for A-levels, so there has to be a pretty good chance that she understood the implications of her symptoms.

A very sad case. If Kasia had told her parents that she had been unwell at school, and about the tests her GP was doing, would she still be alive today?

I'm a lot older than Kasia. A lot older. And one thing I've learned is that parents generally know when there's something wrong, whether you tell them or not. They generally worry more when you try to keep things from them so you don't worry them...if you're with me!

I'm grateful to the lovely Emma for introducing me to this poem:

My New Set of Wheels

There you stand, and I see you stare
Thinking, poor dear, she’s stuck in that chair.
But I’m not sad, I’m very happy because
I haven’t forgotten the way it was.

You’d say, “How about a trip to the zoo?
A walk in the park will be good for you.”
I was thinking tomorrow, I’ll be a wreck,
From my aching feet, to the pain in my neck.

You’d want to go shopping, all over town.
I was thinking but there’s no place to sit down.
For you it’s a snap, just to go to the store.
But for me the ordeal was more of a chore.

Now I can go wherever I please
I can shop in the mall with newfound ease,
Do all the things that have to be done,
And even go out and have some fun.

So, do you want to know how it really feels,
To be sitting here between these wheels?
Can you remember back that far,
When you got your very first car?

Well, that’s how these wheels feel to me.
They don’t hold me down, they set me free.
So, don’t think all those pitiful things:
These aren’t wheels, I think they’re my wings.

By Darlene Uggen
from Chicken Soup for the Unsinkable Soul
Copyright 1999 by Jack Canfield and Mark Victor Hansen

It expresses really well how important, how liberating, a wheelchair is for someone with severe mobility problems. And that's one reason I get so cross with the rules for the provision of NHS wheelchairs here - they seem not to grasp this point at all.

I don't qualify for an NHS power chair from my local wheelchair clinic because I can walk a few steps indoors. Now that doesn't mean I can walk at all on the uneven ground you get outdoors, let alone walk to the shops or anywhere else. Even if they would give me a power chair, it would be an indoor chair only - so it still wouldn't help me with getting out. They'd give me a manual chair, but since my arms are too weak for me to propel it, again that doesn't really help.

I don't just want to stay inside, occasionally managing my few tottering steps around the house. I want - and need, as part of my self-image and self-esteem, not to mention for practical reasons - to get out and be part of the community, as the "normal" person I am.

And that's the reason why I've recently had to fork out just under four thousand notes on my lovely, if rather dubiously named, Quickie.

All I can assume is that "Quickie" doesn't mean the same in the USA as it does here...not what I would have called a natural choice of brand name, but it's a good chair.

I don't blame the individuals at Wheelchair Services. They're implementing the rules they've been given. I may print out multiple copies of Darlene Uggen's poem, though, and send them to whoever it is makes the rules in the first place...