A Crying Shame

Joshua provokes many different reactions from strangers when he is out and about and most of them are well intentioned, even if they are often misguided. Usually his smile or hugs attract a smile in return and some people will try to engage with him or me in some way. One of the most irritating reactions is when they put their head on one side and say “Awww, bless him” or even worse, they say in our hearing “What a shame”. They think , I am sure , that they are expressing sympathy or empathy – I am not sure which – but actually they are being really insulting to us both:

Joshua does not need blessing, what does that even mean? I think that it is an expression when nothing else can be found to say,  then I would suggest that it is better to say nothing at all. What is a shame? That he is the way that he is or that he is on this earth at all? Is it a shame for him or for us , his parents? If Joshua is out and about in his community, enjoying life, then he does not need blessing or shaming, they are only appropriate expressions, if at all, if they were to encounter him in a hospital bed for instance and then it might indeed be a shame that he had found himself in A&E for instance, the same as any other patient might gather sympathy.

But please do not think that it is a shame when he is having a ball out in a cafe or at the theatre for instance, he is enjoying his life probably more than the person that is feeling sorry for him. They can only judge a good time by their own standards and just because he is not ‘normal’, does not mean that he does not have quality of life. If they are saying it during a period of bad behaviour, such as a kicking spell in a supermarket, once again ‘what a shame’ is not the right response – what a shame that he has kicked an elderly person? He does not deserve a ‘bless him’ when he has deliberately hurt another person, even if it is a game to him. You would not say that to a toddler throwing a tantrum, you would hopefully not stare but would allow the parent to handle the anti-social behaviour in the best way that they could.

It is a highly judgemental and insulting reaction to show and I am still working on my best response to this reaction. I tend to smile graciously, but inside I am snarling and want to give a response that will not be unkind but will make them think about what they are implying and perhaps put them off from saying it again to someone else. I never engage in conversation, asking what is a shame and make the stranger feel uncomfortable, though often I would like to. I have said before, Joshua is not to be pitied, he is making the best life he can with the tools that he has been given and he has a great approach to life : he lives for the moment and he does not let things get  on top of him. He spreads joy , mostly, wherever he goes so and that is a talent that he has had since he was a small child and even as a grumpy teenager, he has not lost that people skill. So he does not require either a blessing or to be told that it is a shame, much better to return his smile or his wave and let him brighten your day.

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