If you have a disabled child then you know the ones.  The happy smiley child crossing the finishing line, the child making eye contact and smiling to his mum the first time their cochlear implant is turned on and the amazingly positive stories about families overcoming the odds and making miraculous recoveries.

They are amazing.  Please do not think that there not. I have spent hours watching them and thinking that’s going to be my child. He’s going to be the one that overcomes the odds but what happens to the rest of us.  The ones whose children do not go on to make inspirational videos and have to struggle every day of their often short lives.

For me what it insinuates is that any disabled person can do anything if they simply try harder and practise more. It’s as if by practising and trying more that people think he will be able to magically overcome his disability? In not doing so does that make him someone to be pitied as if his life isn’t worth as much as yours or mine? Does that make me a failure when my child cannot hit normal every day milestones? Have I failed my child? But no amount of wishing and working hard is going to overcome his needs.

Don’t get me wrong those posts can be inspirational and have given me hope in dark times but why can’t the person featured just be an inspiration for what they are doing why does it need to be related to their disability? My son deserves to be rewarded for trying hard, for his achievements the same as everyone else but not for just living his life – he is happy. When you look at a typical child you think ahhhh he’s so happy. When people look at mine you say ahhhh he’s so happy, and some might leave it there, others will say what is being thought and add on the despite everything he has to put up with – why should this be a consideration? Yes, his life is harder than many but its his life and he is perfectly happy with it, he would not change his disability and neither would I. When people say, or are mentally adding on the “despite his disability” it feels like you are challenging the things that fundamentally make my son him – if I was to change his disability it would change him. When you praise him for being happy you make the assumption that he shouldn’t be happy, or that if you had to contend with his disability that you wouldn’t be. Is he brave and inspirational – god yes but not for the reasons you think and definitely not for just living his life. In perceiving his disability as something to be overcome or as a bad thing you disable him far more than his physical limitations.

Ultimately when you say this it stems from the idea that you think that disability is a bad thing and therefore if my son can achieve everyday things that makes him inspirational. When you say that his everyday life is inspirational what I hear is that no what happens your life could be worse, you could be disabled like my child. My son is inspirational but that isn’t because of your low expectations that see his just living life as being inspirational please try and value his achievements and not lower your expectations just because he is disabled.

These videos can be amazing and inspiring but my son is not a failure, and his disability is not an inspiration in itself he is just a normal little boy trying to get on and live his life like every other child.