Tuesday, 30 July 2013

All for a footballers knees

I was at the Hypermobility Syndrome Association's family fun day at 'The Village' Elstree (near Stanmore) on Friday.

That bit of the day was both fun and tiring. And I hope the parents and families who attended found it useful.

One highlight was the Spanish football team Rayo Vallecano de Madrid turning up to use the room next door - fighting their way past the crowd of hyper children and the enthusiastic kids entertainer.

So far, so good. Right up to when a group of us HMSA staff were having dinner.

Then it all went surreal.

I kid you not.

"Hannah, look at his knees Hannah, look!" Yes Donna, they are hypermobile.

And as the poor innocent footballer turns to leave, up leaps Donna, Senior Medical Liaison Officer: "Can we have a photo of your knees - I'm not interested in you, I just want your knees."

Seriously? I mean, it's not exactly the best chat-up line!

Awkward moment of complete bewilderment, while slightly embarrassed interpreter tries to explain what this mad English woman wants.

Fortunately the interpreter had asked Jeff (membership secretary) what our event was, so he knew a bit about the HMSA and the work it does - which may have prevented a call to the police and eviction from said restaurant.

He agreed. Within seconds 2 of the most senior members of the HMSA team were kneeling on the floor in the Hotel restaurant taking photos of the knees of a Spanish footballer. "Shorts up a bit please".

I have never seen such bewilderment. Nor heard such a random request.

As the reality of what they'd just done sank in, we laughed until we cried.

In the gym the next morning, with no interpreter present, who should I meet....KNEES! We grinned sheepishly at each other and pretended last night never happened.

Then who turns up half an hour later at breakfast?


(I wasn't stalking him. I was there first.)

But on a serious note, those knees are going to help explain that hypermobility doesn't automatically mean disability, that with exercise and good management many hypermobile people can still be fit and active.

Whether I will get to a stage where I don't need a wheelchair is unknown, but what I do know is that I am fit and healthy - and make it a priority to stay so through exercise, pacing, and poise (active good posture) - ensuring I give my bendy body the best chance I can.

Monday, 29 July 2013

IPC Athletics and the Anniversary Games

I love athletics. But I think I love IPC athletics more (or Para-athletics).
I got to watch most of the World Championships, thanks to Channel 4 - it is awesome to be able to watch para-sport on TV. 

As usual, there were moments which stuck in my head and ended up as stickmen:
The grin was also there after winning the 100m - when fellow racer Mel Nichols (5th) revealed that Hurricane Hannah's secret weapon was her unwashed socks.
Hannah later insisted they were clean, even posting a photo on twitter..but I'm not convinced.

And there were the most awesome displays of teamwork - the T11 longjump never ceases to impress me.
The joy on athletes faces as they achieved their goals.

While others leave us speechless as they exceed all expectations.

Scott Moorhouse asked if I could do a stickman of him and Richard Whitehead - unfortunately I didn't catch Scott in action - this happened instead:
So, 'Last leg',  Is it OK to ask whether amputees leave their limbs outside their room like shoes? 

Then I saw Richard Whitehead's 200m.

Seriously, man, don't put me through that stress again! I had to hold my breath just in case my breathing slowed you down!

Talking of suspense, Peacock vs Browne: What a contest.

(Well run JP, you make the nation proud.)

And there was Alan Oliveira. And Josie Pearson, David Weir, Scott Jones, Libby Clegg...and so many more.

I confess to knowing very little about athletics really, but you know Terezinha Guilhermina? She runs so smoothly and perfectly. I think watched every race she was in - in both Lyon and London.

And talking of London, having been there in Birmingham a few weeks ago, it was ace seeing those golden blades race to victory. Complete with 'Guns' as he crossed the line - really made me laugh.

His baby daughter's pink ear-muffs were the best.

What wasn't the best was Channel 4's attempt at guided running in the inter-broadcasters relay in Lyon. You guys need some serious training!

 All in all, over this athletic week I have laughed, cried, held my breath, willed athletes on, cheered, and have confirmed beyond all reasonable doubt that: I love para athletics, and I want a proper go in a racing wheelchair.

(Just realised I haven't mentioned the able-bodied Anniversary Games. I enjoyed them too - GO MO!)

Wednesday, 24 July 2013

Mission: X8 Freedom #1

In May I discovered the Extreme X8, an off-roading electric wheelchair. I know there are various places which provide 'all terrain' scooters - but I can't use them due to arm positioning and coordination, plus lack of seating support. An electric wheelchair type positioning...that is another matter entirely!

The manufacturers commissioned me to do a logo. I said only if I get to try one out. And if they were as good as they seemed, I would attempt to get local outdoors-y places to buy one for me (...I mean: for visitors...) to use. So Mission: X8 Freedom was born.

On Monday the mission started for real with my first test drive at Whittenham Clumps - a nature reserve run by the Earth Trust.

Armed with a risk assessment and signed promise not to be a prat (being trained to enforce health and safety comes in handy sometimes) we met in the carpark. Richard from allTerrainWheelchairs.co.uk, Andy from Earth Trust and me. (If anyone would like to see the risk assessment to help with an X8 trial elsewhere, email me)

The carpark was in the middle of no-where. Fields and woods stretching into the distance on every side. Places frequented in childhood and teenage years but now out of bounds, suddenly tantalisingly close.

Then I switched from my chair to the X8. Footplates adjusted to suit, 2 minute explanation of the controls.....and the world changed forever.

For the next hour or more, while Richard and Andy followed discussing battery life, gradients, maintenance (and butterflies), I explored: rediscovering old haunts, climbing hills, admiring the view while the walkers to caught up, through wild flower meadows and long grass up to my elbows, along the unofficial woodland paths created by wandering cattle, down to the moat of the ironage fort - now filled with butterflies.

I had forgotten how magical it can be to go through summer woodland, hearing only insects and birdsong in the soft dappled shade, then suddenly find oneself in a clearing where every leaf is vivid green against a clear blue sky, the bleached dead wood of a lighting-struck tree shining in the sun.

Sometimes fast, revelling in the freedom. Sometimes slow, taking in the sights, sounds and scents.The quiet electric motor barely noticeable. It is years since I have been able to 'walk' without scanning the ground for obstacles - constantly planning the best route for my chair, but half way through I realised: I didn't need to any more. I could just go. Paying no more attention than your average healthy walker - slopes and steps warranted some attention, but standard undulations were completely irrelevant. Unless you have experienced it this is hard to explain....perhaps it is like spending years walking on tightropes where every move has to be planned and precise - then suddenly switching to solid floors, which you had forgotten even existed.

I thought it would leave me exhausted with the effort of keeping my joints in place, but it's ride is surprisingly smooth - more gentle bouncing rather than the 'ancient Jeep' style jolting I expected. The seat is supportive, and despite being 3 inches wider than I need I didn't slide about or feel insecure at all - despite the terrain! I only used a lap-belt, but there is also a harness option.

I'd been prepared to find that some areas were inaccessible - Iron age hill forts were not designed for wheelchair users! But I went up the steepest part of the hill, and down the steepest path Andy knew of - complete with makeshift wooden steps. True, I needed a bit of help from Richard in navigating them, but that was my limitations, not the chair's, and I suspect that someone nearer to the chairs top weight capacity of 28 stone (I think) might not manage the steepest side of the hill, and the actual sides of the moat round the fort which an able bodied person would probably have to bum-shuffle down were out of bounds. Otherwise I honestly think that the entire site is accessible in an X8. Without needing a single tarmac'd path.

It was beautiful.

It was freedom.

It was, in wheelchair terms: inaccessible.

In X8 terms: it was my world, to go wherever I pleased.

Earth Trust is now seriously looking into getting one (Or two? hint hint...us wheelies sometimes have wheelie friends). It is a process that will take a while, but if I can help them I will.

I am already thinking up other places to contact about having an X8.

If anyone wants more specific or technical information on the X8, contact www.allterrainwheelchairs.co.uk. If you want more information from a users point of view, especially if you are considering getting an X8 for use by visitiors to your site, do not hesitate to get in touch with me via email, facebook, twitter, or the comments section below.

If you would like to encourage somewhere to provide an X8, feel free to link/refer them to this blog.

Thursday, 18 July 2013

Trains again

Every time I travel on a First Great Western cross country train, I smile.

They were designed to match my boots.

Because my boots are seriously that famous.

Tuesday, 9 July 2013

Wheelchair Athletics at Stoke Manderville

To celebrate winning the logo design competition for Hannah Cockroft (Paralympic Champion and World Record Holder) I went to a British Wheelchair Athletics Association meet at the Stoke Manderville stadium to meet her.

Loads of wheelie athletes. Wheels were everywhere. Racing wheels, standard wheels, some with people in, some without. Wheels were definitely the normal mode of transport. Although various staggers and bum-shuffles were also in evidence and totally unremarkable. The able bodied folks distinctly on the sidelines as the wheelies chatted, compared, competed and achieved.

Racing wheels!! Oh my word. Racing Wheels! I want to play!!

There was the relaxed feel of....something almost like a school sportsday. Picnics and parasols filling up the strip of grass alongside the track.

I'd just arrived and was looking round in a moment of shyness thinking 'what do I do now?' when I heard a voice "Hannah!!" I turned round, and there was Ben's mum! As in, Ben the young VIP wheelchair athlete I'd met at Birmingham last week!

I was instantly absorbed into their group. We cheered Ben on in his races. And guess what? In the 400, he did a Personal Best by 3 seconds - not only that, but his brake had jammed so he got a personal best when pushing against a jammed wheel! A PERSONAL BEST with the BRAKES ON! Well done Ben! Impressed is an understatement.

During the lunch break, Ben (who's debt I shall be in forever) allowed me to borrow his racing wheels. RACING WHEELS! Helmet and glove on, [LEAN FORWARD OR YOU'LL FLIP!]wedged into a seat 3 sizes too small...I was in heaven. Ben's coach took me to the car park [LEAN FORWARD!]. 

Where I promptly left him behind. I was flying!!...until the emergency stop before hitting the cars at the end....erm....now to turn around.....pull slight wheelie, hoik wheels round. Repeat. [lean FORWARD!!!!] About 15 times. Those things are not easy to turn!

Accelerating off again... hang on...that's Hannah Cockroft by her car...she can wait...this is FUN!

I can't describe it. The speed, the power, the responsive-ness of the chair, the 'play at being a pro athlete'. Sheer joy on wheels.

I could have spent hours in that carpark, playing in that chair. But alas, VIP Ben had a race to do so I sat with Hannah Cockroft, a different Ben (Ben R) and Lauren. And chatted. About all sorts. Hannah C might be paralympic champion, but she's totally down to earth.

And Hannah said I had good arm speed. Smug. And she promised to try and find out from 'fount of all knowledge' Joe if there are any wheelie racers near me/racing wheels I might be able to borrow occasionally.

And back to the trackside ready for the next round of racing.

Then I had to leave before my coolvest ran out. Which, incidentally, got a lot of interest from athletes and coaches.  (for more info on my cooling vest, see here). But not before I got a photo of me, Hannah, and a T-shirt with my 'Hurricane Hannah' logo on it.

Oh, and I may possibly have given her a copy of 'You know you've been pushing it when...' on condition that she tells everyone it's awesome and they should buy one. Shameless advertising.

It was a really lovely day, and I plan to go to more events like that in the future. Maybe I'll even race in one some day.

I don't think my joints or heart would let me take up wheelchair racing as a competitive sport, but I intend to find a way to do it as an occasional recreational activity. Please, mystical Joe, find me a way!

Spam Amusement

 I don't usually bother opening anything that looks remotely like spam, but I wasn't properly awake.

And then I laughed.

This sender genuinely thought I would believe them when they wrote "I am not a spammer - I have looked carefully at your website and know what you need" - and then wrote this:

"I thought you might like to know some reasons why you are not getting enough Social Media and Organic search engine traffic for Stickmancommunications.co.uk1. Your website Stickmancommunications.co.uk is not ranking top in Google organic searches for many competitive keyword phrases." [type in 'disability stickers' and I'm on the 2nd page of google. Twice. Based entirely on my own work - not paying for rankings boosts]"2. Your company is not doing well in most of the Social Media Websites." [Interesting definition of 'not doing well' there. Over 1000 twitter followers and approaching 1000 FB fans, many of whom spend money repeatedly in my shop, and lots of customer interaction in both places, and customer recommendations and RT's.....?]"3. Your site is not user friendly on mobile devices." [people manage to spend money on it from the mobile devices, so clearly not such an issue after all.]

Erm...sunshine...my social media presence is the reason for my business being viable. Not only is it where most of my business stems from, it has led to commissioned pieces, my winning a logo design competition for a multi gold-winning paralypian (Hannah Cockroft), and Channel 4 paralympics wanting to use my cartoons. Are you telling me that top athletes wearing my work and national TV channels asking permission to use my work is evidence of failure? Oh, and I've built this entire business with an annual advertising/marketing budget of approx £100. Which mostly goes on posters and signage for events.

And one final piece of advice: if you really want me to believe that my ability to be found on the internet is so terrible, don't tell me "I found your site using Google search"

Thursday, 4 July 2013

"I don't see your disability"

You don't?...this could be really awkward if we meet some stairs.

On the other hand, they'll never catch me based on your description!

Ok, I know people are trying to say "I don't care if you're disabled or not. If you're interesting I'll hang out with you - otherwise, get lost." or "what's your disability got to do with this?" or "I'm not daft. I don't rate people's value based on their ability to tie shoelaces." So why don't they just say that?

Fair enough if a) the speaker has a visual impairment or b) the disability is genuinely an invisible one, but otherwise: No.

Why is 'not seeing' disability a good thing. As if it is shameful, or embarrassing or something to hide.

Disability isn't inherently negative. Nor is it inherently positive.

It is a normal.

And you can't accept something you won't acknowledge.

Disability may mean doing things differently, but it certainly doesn't stop you living a rich and fulfilled life as a valuable and valued member of society, so why this strange avoidance of it?

You see hair colour, shape, clothing - and they are all different, so why not admit to seeing disability?

Because if you STILL won't see mine, you are going to create some seriously awkward moments where the different approach I take, which works perfectly for me, collides with your inability to acknowledge my difference.

I'm differently normal.
But so are you.

Get over it.

Differently Normal wristbands from www.stickmancommunications.co.uk
[Edited to add: Just thought of another suitable use of the phrase. "I don't see your disability as a problem." I have no objections to that :D]