Tuesday, 18 March 2014

Yesterday I took my boots to visit the House of Lords.

Yesterday I took my boots to visit the House of Lords. My hot pink Dr. Marten boots.

They were a little bit disappointed because the House of Lords entrance is small and dull compared to the House of Commons entrance. Instead of waiting around in a vast area of catherdral like splendour, we waited in a pokey little waiting room that resembled an underground train at rush-hour. Well, almost.

But as my boots received several compliments, and I was armed with my cooling vest, we didn't mind too much.

We were there for the 'Pain Champion Award' presentation. An award for someone making an exceptional contribution to helping the pain community, which was created buy Pain UK (I am on the advisory board of Pain UK, and hoping to do some awareness/fundraising stickmen work with them too) in conjunction with the British Pain Society (BPS) and the Chronic Pain Policy Coalition (CPPC)

The winner was Peter Moore - he's definitely earned it! As a patient learning to live with Chronic Pain, he came up with and developed the 'Pain toolkit' It's a really good, simple, straight forward and empowering approach to pain management, which has won a huge following and is now used across the globe. I highly recommend taking a look. They're even going to bring an app later in the year (or was it next year?)

And I was delighted to find that Peter himself was a down to earth, plain speaking kinda guy with a great sense of humour. And I was delighted  that when I said I was from Stickman Communications he instantly knew who I was.

My boots initiated several conversations as people approached me with 'I love your boots!' - or confessed at the end of the conversation that they had come over because they'd seen my footwear.


Who knew that pink boots would help me network effectively? They never stopped, even on the train home!

All in all a great day, and I look forward to working with Pain UK in the future, helping to raise both public and professional awareness and understanding of pain and it's effects.


Wednesday, 12 March 2014

Disability, ability and false assumptions

As some of you know, I was recently in a dance performance 'Moving with the Times' at the Pegasus Theatre in Oxford. I'm hoping to get some photos and video of it eventually - rather than ones taken from my rather inferior camera. But this blog isn't about the dance, it's about what I learned in the process.

It was, for me, a truly beautiful and unique experience, because the whole piece was choreographed around my physical limitations (lots of floor work, some lying down doing nothing, minimal 'arms above head', etc.) And although other dancers occasionally did things outside my capabilities, the net result was that some viewers didn't realise that I was a wheelchair user until the end - and I was judged as a dancer, not as 'isn't she good for a disabled person'.

And during it I learned a lot about disability, and inclusion, and how easy it is to assume.

I am hypermobile (i.e. overly flexible). While this can be highly inconvenient when attempting to pick up a kettle or walk in a straight line, when dancing it can also enable some beautiful positions that non-hypermobiles simply can't do, and means my natural mode of moving is different.

I started out with the assumption that all 4 of us in the piece should be able to do everything I could - because I was disabled and they weren't. My suggestions were unthinkingly from my point of view. When it concerned the moves I was to make, giving a frank response as to whether they were doable was important, but in the process I realised how many little things I assumed that I now realise I shouldn't have.

Like socks. They were really slippy, which for me was a huge plus as it meant I could dance with maximum floor contact and slide rather than 'step' - minimising strain on my joints and maximising proprioceptive feedback. Perfect. It wasn't until the dress rehearsal that I realised the other dancers struggled with them at times - their brief patches of standing choreography, and their default 'travel' being step rather than slide meant the socks were a hindrance, and something they had to concentrate on compensating for.

I, in my ignorance, had never thought of that.

And then there was the 'snail' move - hard to describe, but a move using a lot of back and shoulder strength and control, and involved being in a 'press up' position then sliding the feet towards the hands with the backs of the feet on the floor. With my hypermobility and years of physio and wheelchair use it was totally easy for me, and quite comfortable. But for some others it was a totally alien move and really rather tough.

Again, it never occurred to me that others were having to make extra effort to do stuff that was totally normal for me.

So I have made myself a promise: to cut people some slack when they make false assumptions about what I can do, because there will be times when I need them to return the favour.