Saturday, 27 September 2014

Bruised Knees

I have bruised knees.

Both knees.

Many bruises.

They kinda hurt. but they make me smile.

Because every time I feel the ouch I remember Tuesday night. 'Dugout Dance' had been closed for the summer, and Tuesday evening was my first session back.

I decided to dance not in my wheels, but from sitting on the floor. That way, when I fall I don't have far to go, so I give all my muscles a good workout and make full use of my flexibility - an asset when dancing, even if it has stolen my ability to walk properly.

It is really hard to explain just how alive it makes me feel to dance 'floor based'. It means that my Postural orthostatic tachycardia Syndrome doesn't complain too much - because I move at my own speed, can switch to lying down whenever I decide to, and there is no need to attempt standing poses or ones with my arms above my head (Both huge triggers for my POTS). The result is bruised knees and 2 hours of exercise at whatever intensity I feel able to do, and where I feel truly beautiful and at one with my body. A moment where there is nowhere else I'd rather be.

So I feel the bruises and remember the beauty.

And and all is right with the world.

Saturday, 20 September 2014

To ask, or not to ask, that is the question.

Last Saturday there was an article in The Guardian by Robert Hoge called
Don'ts' aren't helping: here's five things you can say to someone with a disability
It makes some important points - not least that many people who aren't used to disability are so
terrified of saying the wrong thing that they are almost unable to relate to people with disabilities, and this does need to change.
Description: A scared looking stickman in a cloud of politically correct angst sat next to a stickman in a wheelchair saying Hi. Caption reads "Differently Normal, not the PC police".

But I'd have to agree with Mik Scarlet's response that actually, no. Some of those are not things people should be encouraged to ask.

Mik is totally right where, when addressing the 'tell me about your disability' question, he  states
"...for every disabled person who is in a place where they can answer this question there are just as many who are not. "
There are times when asking this question is cruel and extremely upsetting. Don't ask a random stranger this, just don't.

Even so, Robert makes this excellent point:
"If we want to bash through barriers confronting people with a disability, we need the community to have a better understanding of us. This probably means some uncomfortable conversations – for others and for us. Focusing on what people shouldn’t say isn’t the way to build good relationships. If we can face living our lives in these bodies, we can face some difficult exchanges along the way."
But this doesn't need to be said to the non-disabled public. It needs to be said to us people with disabilities, so we can support each other in finding our own ways to open up the lines of communication, and find ways to let people understand our world. It is why I started Stickman Communciations - communicating about disability in ways that both disabled and non-disabled can relate to.

So: What should be said to the general public? (Other than Rob's much needed observation that it is OK to say hello.) To me, it is simple.

Forget about disability.

There are various phrases which are routinely used for 'random stranger' conversations.

1. "Lovely/Awful weather isn't it!"
2. (In a shopping centre, to someone with many shopping bags) "Managed to find some good stuff then?"
3. (On public transport) "Looks like the train/bus is late again/on time for once."
4. "Having a good day?"

The reply to these is usually
Chatty, encouraging more conversation - in which case carry on chatting. And over time chat might contain more slightly personal questions (about work, life, health, family etc.). But not overly-personal (i.e. toilet habits, sexual issues etc.)
Blunt, annoyed, or they turn away from you. In which case, don't attempt to carry on chatting cos they aren't in the mood.

And if we put the disability issue back in? It's exactly the same. 

(No. it isn't OK for a random stranger to walk up and ask me how I use the loo. Yes, this really happens.)

As to when is it OK to ask about disability...well, it is a personal matter. Some parts of a disability might fall into the 'slightly personal' category, some the 'overly-personal'. So, if you've got chatting to someone and would like to ask about their disability, the best option is to say:
"May I ask you about your disability?" - and then respect whatever answer you are given, whether a yes, or a no.

But can you offer help? - again, take out the disability. Do they look like they are struggling? Yes? - offer help. No? - Don't offer help.

And as to telling a person with a disability that they are inspiring....guess what.....take out your perception of disability, and then consider whether the facts that you know give rise to the inspiring or not.
For example:
I get on a train, and wheel myself expertly into the wheelchair space. A gentleman leans over and says 'That is really inspiring'. No. It isn't. It is a basic skill that is well within my physical ability, and no more notable than an average non-disabled person sitting in their seat without squashing their neighbour. Unfortunately all this comment told me was that his expectations of my were almost non-existent, so his praise was, at best, extremely patronising.
Another example:
I get on a train. I chat with the chaps opposite. During the conversation my wrist dislocates and one of them helps me relocate it. I then manage to choke spectacularly and can't speak. I roll my eyes, and signal "I'm OK" - and use my keyring cards to explain that 'My ability to speak coherently is temporarily missing, please try later.' My part of the conversation switches to hand gestures. As they help me off the train at my destination, one of them says "You are inspirational."
Fair enough. They had seen me fall apart and deal with it calmly. They had seen my body do things which I hate it doing, and stay positive.

So before you tell someone that they are inspiring, just ask yourself "do I know from what I have seen and heard, that they have pushed their limits in an exceptional and inspiring manner, or am I making assumptions?" - and when you have your answer, you will know whether it is appropriate to say it or not.

[Edited 22/09/2014 to add: Perhaps the reason there are few 'what to say to someone with a disability' lists because they would be so long the brain would melt half-way through. Topics from space travel, to 'Lost' via whether Elvis really died, and where do odd socks really go?]