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Saturday, 1 March 2014

what's wrong with him? {disability and communication}


As medical technology and techniques improve, there are more and more children surviving premature birth, congenital defects, cancer, and many many other health related challenges.  A logical consequence of this is that as time passes there will be more toddlers with disabilities, both congenital (present at birth) and acquired (a result of disease, condition or circumstance occurring after birth), and thereafter more children; more teenagers; more adults.  

Hand in hand with increased numbers of children with visible and invisible disabilities, there is a (slow growing) recognition of some disability related issues - both on a big picture society-as-a-whole type scale, and on an individual level.  The nationwide behind-the-scenes stuff includes changes in legislation; funding to encourage participation; as well as impacting in more obvious ways on disabled people's day to day activities - the increase in accessible toileting and changing facilities for example.  These top down changes can make a genuine difference to the quality of life for some, while others might find it more difficult to pinpoint changes relevant to them.  I think I notice less people staring now than I did ten years ago - perhaps because seeing disabled children out in public with their families has become less of a rarity and more (oh yes, that word) ... more normal.  Of course that might also be partly due to my not noticing the stares as much, but I'd like to think that times they are a'changing!

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A consequence of disability in general being demystified is that people - some people - feel less constrained by established societal rules, and are curious.

Now, to make my position clear from the start, if there is something someone would like to know about Smiler, I'm fine with them asking.  If you're wondering what he's doing with his hands because you know British Sign Language and you know that's not it, ask me, and I'll give you a brief explanation of Makaton.  If you're looking at his amazing bouncebackability T-shirt, and wondering where it came from, ask me and I'll tell you all about it (and a lovely guy called David who works for Tesco).  If your son is whispering to you, wanting to know why Smiler's in a wheelchair, ask me, and I'll explain (depending on the age and understanding of your son) why that is.  

I'm even fine with "what's wrong with him?"

I know many others who aren't, but I'd much rather someone phrase things badly (or insensitively!) and ask the question than keep quiet out of fear of saying the wrong thing.  Having said that, knowing others might not have such thick skin, I'd recommend if the situation arises you stick to the less potentially-taken-as-being-value judgement-y "does he have a diagnosis yet?" - that tends to be my fallback!

But is then is this reluctance to use the word wrong purely political correctness gone mad?  I'm certain I'm not the only parent who has tried desperately to head off the question I can see forming on the perfect rosebud lips of my toddler upon spotting a rather large gentleman on the bus, just an hour after explaining for the fourth time that Auntie Betty isn't fat - that there's a baby in there.  So in the same way that we have been brought up understanding that you do not mention Nanny Maureen's hairy chin; or the neighbour's bald head; or the fact that one of the dinner ladies at school only has one arm ... see how easily (and perhaps naturally?) we've been taught not to mention disability?  And why?  Because it would be rude. 

Does this social nicety serve to instill awkwardness in people when discussing issues relating to disability?  Might we have to defy conditioned responses established in childhood to face the realities of disability?  Perhaps there is little wonder that it takes so long for changes to happen, if we live in a culture conditioned to ignore disability in order to remain a polite, civilised society.

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This post is one of a series of posts relating to communication and disability - please do share your thoughts, either in the comments, or by emailor on twitter (I'm @abstractLucas) - I'd love to hear from you.  If you put your email address in that box at the top on the right, the next post will appear in your inbox when its posted, as if by magic ... probably!


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