Friday, 31 May 2013

A Differently Normal Weekend #1

On the weekend of 25th May I went to the HMSA 'Big Bash' in Rugby, staying the weekend in a local IBIS hotel. It was quite a weekend. I thought I'd share the main highlights here, but over the next few weeks may add other 'memorable moments' from this very differently normal weekend.

I had found the IBIS hotel at Crick online. I called to find out about accessible twin rooms, and instead of 'oh it's accessible' or 'oh no, it isn't accessible', they outlined the shower facilities, then sent photos of the room so I could make my own decision. Perfect.

I stayed with Carla. Another bendy wheelchair user.

Later, Carla told me that the staff were friendly, helpful - and rapidly learning about disability.

Sometimes perfect isn't people understanding the ins and outs of complex disabilities - it is their willingness to learn, their cheerful acceptance of each learning opportunity, and their absolute acceptance of me as a human being and valued member of society.

The HMSA event went well. Chatted to various people. Raised awareness - and money. And returned to the hotel for a nap before dinner.

Again, the staff did something I've never seen before. Instead of a waitress standing awkwardly trying to work out which foods suited which allergies, the assistant manager wrote out a list of foods from the menu which complied with the allergy list, and gave it to Carla for use at any meal while staying there. Practical, without fuss and extremely useful. Although I could possibly have worded my menu request better....

Filipa was the perfect waitress. She joined in the joke, not in the least awkward with our various disabilities and allergies - or our attitude to life, friendly and with a great sense of humour.

So, after laughing til our sides ached, we headed for our room, believing our HMS awareness work was done for the day...until Carla dislocated her shoulder, with her right elbow by her left ear and totally unable to relocate it.

And once he was educated, we moved on to 2 orthopaedic surgeons. 

 I didn't get back to the hotel til 8am, Carla didn't return til 4pm. So we stayed an extra night. Arranged at 5am. Which the fabulous assistant manager - Bode Philips - took in his stride.

And do you know what? even with the A and E trip, and exhausting HMSA event, it was still a relaxing experience. I don't think I have ever stayed somewhere where all the staff I met were friendly, polite and proud of their work. Happy to help, but not offended if help was refused. And it wasn't just us getting special treatment - during dinner on Sunday we got chatting to a lovely chap (worked in a prison, was buying a canal boat) who agreed - the staff at the IBIS hotel in Crick are simply: 

The Best.

So now Filipa has a differently normal keyring, and the rest of the staff have wristbands 

Thursday, 30 May 2013

Dancing - my way.

I know it is short notice, but I thought I'd let people know that tonight (Thurs 30th) and tomorrow (Friday 31st) I will be performing with 'DugOut' in 'Tra^verse' - a dance event at The Castle in Oxford, from approximately 4:30 til 6:00pm.

It is a free event, and there are several other dance groups performing too.

It has been just amazing to find a way that I can dance  - where my flexibility is an advantage but I am not pushed beyond my limits.

I seriously can't wait.

So if anyone fancies popping along, I think it will be a really good time. I will try and get someone to take photos, but I can't guarantee it.

Wednesday, 22 May 2013


I never used to be much of a shopper, but now: I love it.

I love popping into town to get something and having a browse while I'm there. Because I can. And because it is so close to home I can go for 5 minutes or a couple of hours, whatever I decide.

Usually I don't buy much. Sometimes I do.

I can wheel myself, decide where I go, what I look at.

I can be one of the crowd.

I can do my own thing amongst a host of people - all doing their own thing.

The simultaneous feeling of freedom and belonging as I pull a handbrake turn outside a shop where something has caught my eye is beautiful.

Sometimes I will browse for longer, enjoying the smooth flooring, wide aisles, and (occasionally) music. It's hard to explain if you've never been in a rigid framed, lightweight wheelchair...but the absolute control over the chair - how it responds to the lightest touch, the precision, style and smoothness of each movement...even stopping to look at a tupperware box can feel (and quite possibly look) like a well rehearsed dance move. I confess that sometimes I feel a flash of pity for people not on wheels.

And when I stop to eat a Greggs sausage roll - I have my own seat. No need to wipe down a damp bench to perch on.

True, I often have to ask to be passed things from high shelves, or have aisles unblocked, or take a detour around something that feet can ignore but wheels can't, but that is just how it is. It doesn't stop me loving my trip.

Perhaps this is why, when I am shopping, I find the 'oh you are so brave' and 'it must be so difficult' comments so....disorientating. My world of freedom colliding with another's perception, my brain stumbling over things I can't quite understand.

When I shop, I am not being brave. I am living.

Monday, 13 May 2013

The start of a new mission?

Oh. My. Word.

I am hopping with excitement. (Metaphorically speaking).


Because I have the best commission request ever.

A cartoon showing an Extreme X8 all-terrain wheelchair in use - which of itself is pretty awesome.

But the best bit?? I get to try one out!! Purely for research you understand. Not because it looks like fun and I like joy-riding. Honest!

You know how you accept that your disability stops you doing certain things (whether it is standing, or ironing, or mountain climbing or whatever) and you kinda forget about them and get on with all the things you can do? Well, being properly in the countryside, with green and views and that sense of freedom and beauty that I love about being in the middle of no-where is one of those things. Yes, I can go along paved/tarmac'd paths, and even some moderately uneven paths for a few hundred metres sometimes. But not go on a proper walk to somewhere out in the sticks, where I can just be. At least, not without being hauled about by a small army of helpers and caused significant pain/injury - which kinda spoils it. And anywhere that has no path or involves hills - forget it.

Anyway, as I said, I'd accepted that proper rurality wasn't an option. I watch Julia Bradbury on TV as she visits places in the UK that take my breath away. My heart aches because I won't see them for myself - but at least I can see them through the screen.

Until I found out about these. Suddenly the beach is a possibility. So is going out in the snow. So are picnics in the hills and hiking across the moors. And the lake district. And....I can't put it into words properly...but....being able go through a bluebell woods, or pick a wild flower, or go to the edge of a stream and watch the tiny fish...things like that are...special....and....and the thought of being able to just do things like that without help, just do them, beautiful it makes me want to cry.

So I've decided: if, when I try these wheels they are as good as they sound, I'm going to try getting outdoors places to have them for hire. Places I loved as a child but thought I would never return to. Places I go in my dreams but thought they were out of bounds.

I am under no illusions about places struggling to finance these, but even if only a few places got them, how much difference they could make to so many lives. Including mine. And while some places do have off-road wheels available, to the best of my knowledge there aren't any that do near me. And I want this to change.

So perhaps this small commissioned piece could end up with a more far reaching effect on my life than a simple payment. And perhaps it could result in new freedom for others too.

I will, of course, keep you all updated!

Wednesday, 8 May 2013

Next Project: New Keyring Cards

With the hospital and PoTS cartoon books as complete except for the foreword (which is being written by someone else), I was planning to take a break between projects. But having nearly run out of 3 different keyring cards (it seems that being featured on the BBC 'in pictures' web page was rather beneficial) I've decided I need to do an urgent re-print.

That means I need to create another few cards (I have to print in batches of designs).

I have decided that this next batch I'd like to do a couple relevant to/useful to people with Autistic Spectrum Disorders, and possibly some which would be useful for people with mental health issues such as depression.

So, if you have any suggestions please add them as a comment below, suggest them to me on twitter or facebook, or email me at

I wont be able to create them all, but I will be able to do some and will keep the others in my list for future print runs.

I am already working on one with an explanation of fibromyalgia.