Beyond Beauty

I imagine that every parent thinks that their child is beautiful, it is the natural order of things as they are part of you. But Joshua has certainly grown up to become a handsome young man and with the most winning smile. Since he was small, he has laughed and smiled here on holiday more than anywhere else I know, it simply makes him happy. As  a result, I have captured plenty of beaming photographs while we have been away this week and so I have quite an album from this trip, what with all my beautiful sunrises and Joshua’s smiling face!

Joshua’s good looks will not make him any more popular, but his smile is definitely infectious and it wins him friends, even with strangers. He usually catches somebody’s eye while out and about and gives them a wave or grin. I can recall his  swimming teacher, when he was younger, saying to me that it was ” such a shame, as he looks so normal” and I was so stunned at the time that I hardly knew what to say in response.  I think that I spluttered something about it not being a shame at all, we thought he was gorgeous. She seemed to be suggesting that his good looks were wasted on a child with special needs as he would never grew up to live independently and find love, or am I being over-sensitive? Perhaps in her mind, to look normal was a compliment? But whatever she meant by it, what a crass, insensitive thing to say to anyone and particularly when she worked with special needs children day in and day out, she should have known better and I ought to have made a complaint.

Joshua’s lopsided gait, his big NHS splints and boots, his ineffective, twisted right hand and his behaviour, give away that he has special needs, even to those who are unfamiliar with disability. But there are many with invisible disabilities, such as autism, where the untrained eye might struggle to diagnose them. These are the more vulnerable young people potentially, as they may feel as though they can go to the shops alone or even play outside with friends, but their view of the world may well get them into trouble. If they do look normal then the world may not make allowances for them, in the same way that they are made for Joshua. He will never be out alone, he will always need a carer/companion and in this way he is protected, but in finding their independence, those with invisible disabilities need to be taught additional skills about keeping themselves safe. That is an extra dimension to raising a child with special needs that I have not needed to worry about particularly, as Joshua is always with trusted adults who will do their utmost to keep him safe.

But in the meantime, I hope that Joshua will make the most of his last full day of holiday in our Happy Place, as our week has flown by.

Hidden Depths

I was shocked at a story that someone else posted on Facebook yesterday,as an illustration of how judgemental people can be towards disability and I have not been able to get it out of my mind : a single mother had taken her terminally ill son to AlderHey Childen’s hospital and had parked in a disabled car parking space, with her Blue Badge. When she came out, somebody had left a note on her windscreen saying:

“You lazy, cunning bitch. You did not have a disabled person with you! These spaces are reserved for people who need them!!”

How disgusting a human being does that to another person in a hospital car park?  The mum justified her son’s diagnosis and need for a disabled space, as if she had to. I was furious on her behalf and it got me to thinking about society’s attitudes towards disability. In many ways, the fact that we get a wheelchair out of the boot when we use a car park space, is probably more acceptable to the writer of this note – I am really hoping that there is only one such narrow minded bigot in the world! But this lady’s son looked ‘normal’ – she posted a photograph to prove it – and so he faced that unpleasant judgement. There are several peers of Joshua’s at school who have autism and how, at first glance, it would not be obvious that they had a disability to the untrained eye, yet they are equally deserving of a Blue Badge as Joshua is. It is not simply a perk for those with a physical disability, it can be a necessity for people with all types of challenges in their life, which can be visible or invisible. I understand that incontinence ,for example, is one of the criteria by which Blue Badges can be awarded, given the need to be close to facilities.

In my experience, the criteria by which Blue Badges are awarded have become more stringent as abuse of the system has increased; there is heightened awareness of carers using the family Blue Badge to evade parking charges or to use priority parking but that does not give any member of the public a right to leave such an abusive, agressive note on somebody’s windscreen. It was for hospital car park security to challenge any suspected abuse, but in this case they ended up counselling the distressed mother who broke down on returning to her car. She was already having a stressful day as she was taking her terminally ill son for an MRI scan and she had probably held it all together , for him, during that appointment and then she had been broken by such a thoughtless, cowardly note.

I find that it can often be the smaller, unexpected things like this that tip me over the edge, not the big health appointments that you can mentally prepare yourself for. I often say that we are walking along a tightrope everyday and it does not take much to topple us off balance and  send us crashing to the ground. This mother did not need to defend herself against such abuse and that I hope that the angry perpetrator gets their come- uppance some day, as they should be ashamed of themselves.