Friday, 13 July 2012

Being Inspirational

Decided to try and decide how I feel about this through blogging today.

Having a public appearance tomorrow, I need to handle any 'you're inspirational' comments well. I can't snap at people because then they won't buy my books! - I mean, because it isn't nice.


Why does being told I am inspirational annoy me?

I get told I'm inspirational by complete strangers, where all they have seen is me being wheeled up a ramp onto a train, and manouvering myself into the wheelchair space or pick up a packet of cornflakes or sit and have a drink.

For me, these things do not require great bravery or courage. And even if they were difficult for me, I am fully aware that the person being inspired has no way of knowing what my struggles are - which kinda invalidates the praise.

So it doesn't feel like praise. It feels like 'Clearly your life is terrible, so I, from my pedestal, will be inspired by you because you have exceeded my expectations for you, which are practically zero because you use wheels and therefore can hardly do anything.' At best, a backhanded compliment - at worst, an insult.

It unsettles me. I know that I have done nothing noteworthy - yet am routinely at risk of being fawned upon by strangers. But if I really challenge myself and go for it (e.g. use crutches instead of wheels) - strangers won't think twice about me.

Their inspiration isn't triggered by me, or anything I have achieved, but by their own view of disability. I am immaterial. The disability is the important thing. I don't like it.

It is really really uncomfortable to be praised highly for something that is totally normal/automatic. Would you praise an ablebodied stranger for managing to open a standard door? What about if they drank a cup of tea? - not unless you wanted to insult or patronise them.

I want people to accept that I have a different normal and it is no big deal. Yes, I have wheelie skills that they lack, but if I started telling every person I saw who walked better than I can "You are inspiring, the way you walk" I'd soon be locked up for excessive weirdness and harrassing members of the public.  - so what gives them the right to do that to me?

But on the other hand...

I get exactly the same phrases said to me by people who know me a little. Perhaps the guy I've been chatting to for an hour on the train - who's witnessed my ability to speak go AWOL. Or the taxidriver who used to live down the road from where I grew up and has driven me loads of times - seen me on bad days, knows a little of my condition. Or the nurse on my hospital ward who has just relocated my wrist. Again.

My initial reaction is the acute unsettled feeling of wrongness. The knowledge that this phrase is based on assumption and is actually nothing to do with me at all.

And then I think - actually, they do know a bit more about me. They do have a shrewd idea what some parts of life are like.

To be honest, it still feels wierd - because, for example, learning to cope calmly and cheerfullly with random bouts of inability to communicate verbally is, for me, just another essential life skill. But thinking about it, well, not everyone does cope calmly and cheerfully with that kind of thing. And most of my coping strategies/skills are based on my faith in God - so hardly something of great personal merit.

And then there are comments in reaction to my stickman pictures/work...

Again, this feels weird because mentally I link it back to the disability - relevant in scenario 1. But actually, thinking about it, someone liking my work really isn't about my disability at all - it's about my work.

And while I don't think a talent for drawing stickmen is particularly inspiring, nor my ability to 'take the mick' as something of great worth, other people can think what they want.

So: in conclusion, this is how I currently feel:

Don't go up to a stranger whom you know nothing about and declare that you are inspired by them. It is weird and often you are basing your reaction on lots of assumptions which may be incorrect.

If you get to know me a bit (or a lot), or if you like my stickmen and decide I'm inspirational....OK. Very nice of you and all that, I won't be offended - but nor will I treat it like a profound comment. If I inspire you to live a better life, happy days, but really I'm just getting on with my life. Occasional comments are OK if you feel the need, but don't overdo it.

And I reserve the right to be amused.

After all, 'inspiring' is generally used in association with 'getting off ones backside and doing something' - whereas I remain firmly planted on mine.


  1. How do you handle bouts of nonverbalness? I also have nonverbal moments. Do you use a type to speech program, sign or just ride it out? Or something else?
    I won't tell you you're inspirational, I don't like that either!
    Lisa Anne from Facebook

  2. I use my communication cards - see this blog post I find they take the awkwardness out of it - let the other person know what is going on, that it is 'normal' and also that I am still a person with a sense of humour. Then gestures and/or writing work well.

  3. You inspire me because you are pursuing your dreams and creating products that are useful and very needed: from the "key ring" cards to books normalizing disability. Now THAT is inspiring ;)

    But having a different mode of movement than I do? That is not inspiring, that's just life!

  4. I agbree - get the same phrase used in diferent settings. Graham

  5. I am one of those strangers who has called you inspirational, in particular on my Blog and while I am feeling really terrible for doing that if you don't like it, I feel I ought to justify it. It is certainly not from a feeling that you have somehow exceeded my expectations for a 'disabled' person. At least I don't think so but I will accept the challenge to question my motives again.

    Whilst you are right in saying that I have absolutely no way of knowing what your struggles are, as I am so-called "able-bodied", I feel it is maybe a bit harsh to judge that I can't have some inkling that some things will be easier for me to do than you, and want to empathise. People don't have to understand it fully to care do they? I honestly don't want to sound critical but whilst you might feel that manouvering yourself in a wheelchair doesn't require great bravery or courage, the fact that you do it so cheerfully and are so willing to share the experience and help others I am sure does sometimes take a lot of bravery and courage. It is not just what you physically do, but the attitiude with which you do it, that inspires me. You would be perfectly within your rights to moan about your lot in life, more than other people who do it constantly, but you are able to accept it as your norm and that inspires me to accept my difficulties more easily.

    When I was diagnosed with Cancer, friends said how brave I was because I wasn't constantly in tears about it whenever they saw me. I didn't think I was brave because I didn't have a choice, I had it and that was that, crying about it wasn't going to change that fact, as far I was concerned. When it was gone I was able to look back and perhaps acknowledge some of what they said and own it. I could have fallen apart or given up or shouted at God, "Why me?", but I knew he didn't do it and he would help with me it and he kept me brave, so maybe I was a little brave after all!

    So maybe you can accept you are a little inspirational after all, without seeing it as a criticism!!

    Sorry for writing an essay anad I hope I haven't offended you in any way!!

    Love Arwedd xx

    1. No offence, and point well made. I'd put you in category 2 anyway - because you DO know a bit about me. Plus you've met my stickmen. So provided you don't tell me I'm inspirational every time we communicate you are in the clear :)

      It isn't that people can't empathise, or understand, it is that when there is no interaction what-so-ever, simply a few seconds of observation - not even enough to know much about attitude or how I handle things and I get an 'inspirational' just makes me feel soooooo unsettled.

      For all they know I could be an OT spending a day in wheels to get a bit of an idea what it is like. Or they could be seeing my naughty little sister who's sitting in my wheels cos I've just walked to the loo. Knowing that the above scenarios could elicit the same 'you are so inspiring' makes me distrust 'no previous interaction' comments altogether.

      I don't mind complete strangers being inspired, but I'd rather that they kept it to themselves - or at least made the effort to get to know me before telling me what they think of me!

      BTW I just love your blog.

      (Now I've written an essay reply! oops! Oh well, it's my blog so I'm allowed to.)

    2. Or maybe my lovely hubby, going for a ride in your wheelchair up and down Ward 53 in the BHI!!

      and he's definitely not inspirational ..... although.... does coming back from the dead count as inspirational?

      I promise not to tell you again!!

      Love Arwedd xx

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