As humans we are born with the capacity to talk, think, learn, grow. But this isn’t the case for millions of people all over the globe. Many have hidden disabilities you maybe don’t realise exist. Mostly as we get older we take responsibility for ourselves. But, for those children who grow up with a learning/ physical disability, taking responsibility for themselves can be one of the biggest challenges. Children who don’t learn or grow at the same rate as ‘normal’ are severely overlooked or ignored. It’s hard to understand something we can’t see, but we should try and look beneath the outside shell and see the potential struggle that’s happening within.
This topic falls close to home for me and my family. My little sister Lucy has a genetic disease known as Noonan syndrome, which causes growth, learning and physical issues which affect her everyday life. She has undergone several surgeries since being 6 years old. Now, Lucy is realising some of her differences such as: her height, her inability to run as fast as her friends, her very curly hair nobody else naturally has. For Lucy, these differences are what she calls ‘unique’. Lucy sees her problems as an opportunity to be the best she can be. She will gloat about how small she is, and tell you that she is super special and super strong, and in her words ‘I am a ninja because I have ninja syndrome’ (which is her “terminology”, for her genetic disorder). For many children this isn’t the case; society has stressed their ‘differences’ as adverse and thus inadequate compared to ‘normal’ people.
If I was to name the funniest, happiest, most amazing, kind, brave and irreplaceable person in my life, it would be Lucy. I’m sure other people who have a child or a friend with ‘challenges’ or a ‘disability’ will agree, it renders them more fantastic. They fight through so much physical and mental pain throughout their lives. Knowing that strength gives you an appreciation of their life.
Therefore when we refer to these individuals who may have a ‘disability;’ ‘disadvantaged life;’ ‘special needs’ or other overused and frankly offensive terms, I think we should rephrase. ‘Extraordinary’, ‘unique’ and ‘one of a kind’. Rephrasing makes all the difference. This way people using a wheelchair won’t have to be defined by ‘a disability’ but having an ‘extraordinary’ way of living. Children who learn at a slower pace won’t be considered ‘behind’ or ‘disadvantaged’ when supported, but just temporarily struggling. People may feel ashamed to admit they have their medical diagnosis, but I think that it should be something we encourage people proud of. Although they shouldn’t be defined by it, they should be able to own it, and be given opportunities matching everybody else. To be given help and equal treatment. If anything these truly one of a kind individuals should be idolised and looked up to for their strength to everyday survive and continue learning, growing, walking at their pace.
I have met and read about some amazing people, mothers and fathers who are not only just as incredible as their relative, but who have understood and allowed themselves to be patient when learning or growing or talking was slower for their loved one, when diagnosis took too long or was too gruelling of a process to sit through, or filling out paperwork to find the perfect school took hours, and the many phone calls that had to be made when your child/ sibling was considered to be ‘angry’ or ‘violent’ in the classroom. You have made such a difference in this very discriminative and cruel world that your family member has been released to. I especially want to shout out my mum and dad and my other sister Holly, who have been just incredible with understanding Lucy when others didn’t.
To finish, I just want to remind anybody who has been told how ‘disadvantaged’ they are, that you are a warrior. You are unstoppable. You are unique. You are extraordinary in ways other people can’t be.
And to society – ‘There is no greater disability in society, than the inability to see a person as more’
Article by Young Reporter Grace
First appeared in Grimsby Telegraph 13th April 2021