She is out, in the local supermarket. She sees a family, also out together, just going about their business. The couple, maybe married, maybe not, are with three children. You can’t see wedding rings as it’s cold and they have gloves on. The ‘mum’ is holding the hand of a little boy, who looks full of energy but maybe a bit unsteady on his feet. He’s fallen over a couple of times too. He has big bulky boots on. She isn’t sure she has seen those on sale in Kid’s shoe shops. There is an older boy, chatting to ‘Dad’. Dad is pushing another boy in a wheelchair.
The boy in the wheelchair has plastic splints on his legs, looking sort of like what Forrest Gump had that time, but with less metal and more modern. He has normal shoes on though, just like other children wear. The chair has pictures of Star Wars on the wheels. It’s slightly reclined. She wonders if the boy knows what Star Wars really is. He isn’t talking, can he talk? On the back of the wheelchair hangs a little superhero back pack, and what is probably Mum’s handbag. That’s a nice handbag. She looks ok, looks like she’s straightened her hair and had a fringe cut as it’s quite shaped. I wonder where she gets time to do that, she must have her hands full.
Are those boys twins? They look fairly alike but one looks a bit smaller than the other. Both boys look disabled. Blimey that’s some crap luck. She wonders what’s wrong. She assumes there must be something genetic as there’s something wrong with both of them. She wonders if anyone’s given the older boy a genetics MOT. He looks normal though. One of the little ones has clearly come off worse than the other.
Though, the little boy who can walk, he’s got hearing aids in. They are bright blue. She wonders why they are blue – there’s no missing those, if it was her, she would have chosen a more neutral colour to hide them behind his hair. She wonders if his deafness is why he is shouting. He’s clearly having a meltdown about something. Mum has just given him a magazine to hold off the shelf. SHE wouldn’t pander to any tantrums, however much he kicked off. Some people just can’t control things. Mind you, mum has got her hands full. That looks like a whole heap of hard work. Wheelchairs, illness, deafness, equipment. Blimey. The lady wanders off to get the Joint for Sunday lunch.
This wasn’t just one person. This is a collection of thoughts and opinions that people have given me over the years. It’s so very easy to base opinion on first impressions, so easy to base opinion on what you first see or first hear. So many people have said to me they find it hard to see beyond that though, to see beyond the disability. They didn’t know how to talk to my son, whether that be to Reuben, in case he could not converse, or to Zachary in case all he knew was sign language. They were unsure of the equipment, of any noises they made or from touching them… in case their hand got covered in dribble.
This is the reality of Cerebral Palsy.
Some of society still lives in fear of disability. Fear of the unknown, how to act or what to say. I wish I could take them by the hand and show them there is nothing to fear, and how they can see beyond the disability if they try.
Beyond the disability there is so much more to my sons.
If all you see is the wheelchair, you won’t see the strength Reuben has formed in his legs after the daily Physio regime he has every single day. Behind the tight muscles and the chair, there are the war wounds of his leg surgery which display his strength and his courage for every operation and anaesthetic he has ever had. His courage and determination are his hidden superpowers. They are deeper than you will see and an innate beautiful part of his soul.
If all you see is his back pack, you won’t see what’s in it. Yes there is equipment, but there is also his favourite snack of chocolate cake which I can guarantee he can eat faster than you. Oh, and he loves a roast dinner too. And a McDonalds.
If all you see is his wheels, you will miss the understanding of the Star Wars spoke guards. How he loves (and very much understands) Star Wars. How he can recall and tell the characters far better than me, how he sits and watches it with his brothers. How they sit together as a trio and marvel at the Millenium Falcon and how he dances energetically whenever he hears the theme tune. How he can’t wait to go to the cinema this February to see Lego Batman as lego is his favourite toy. How he loves toys.
If all you see is him listening, you won’t hear his voice. His voice is my heart’s song. He is a joy, great company and has a wicked sense of humour. He may sound slightly different to the rest of us, but he sees and speaks of the world with a deeper appreciation for the things that sometimes we all take for granted.
If all you see is a boy in a chair, you will miss his character, and the love he has for his family. You won’t know his love of audio books and a cuddle before bedtime. You won’t see the beauty of his mind and his imagination, how he asks me if I’ve had a good day and how he truly cares for those around him.
If all you see is the hearing aids, you won’t see how these are his ‘ears’ which lets Zachary join in games with his friends and chat to me after school. The blue aids are the colour he chose himself, as he has his own thoughts and his own opinions. Valid opinions not deemed less important by the disability that sadly categorises him by some.
If all you see is the heavy boots, you won’t appreciate the effort it took him to learn to walk. Yes, the positional boots help him but he can run and jump and likes to play at the park. His mind takes him to the world of pirates and cowboys and he will always defeat the ‘bad guys’. You see, superheros always win.
If all you see is the meltdowns, you won’t see the love and affection when he is calm. You won’t know his love and gentle nature with animals. If you could see behind his eyes, you would know he sees the world as a very confusing place. Sometimes that’s overwhelming for him. Yet, his affection and love for us shines through as he takes solace in the love of his family to make sense of his surroundings.
If all you see is a mother and father, with their disabled children, you won’t see the strength of the unit we are. A mother and father, who don’t sleep much, who sometimes have the weight of worry on our shoulders. Take us at face value and the disability is prominent. Look deeper and you will find unity, respect, understanding, patience and gratitude. You will see a family like any other, with a different level of challenges yet with the power to face and overcome them.
I would encourage people to open their eyes to things that stray from society’s ‘normality’. Whatever ‘normal’ is. I would ask them to accept and celebrate differences. I would will them to see the beauty in things they don’t yet understand. Be patient, take the time and leave any discrimination at the door. Open their hearts and open their minds.
My sons are more than the power of their limitations. They are more than Cerebral Palsy. They’ll be far more to discover if you see beyond the disability. You are guaranteed a lovely surprise.