I hate that word. Not that there’s anything particularly wrong with it as a word in itself. It’s just that, when applied to people, it’s so negative and judgemental. I mean, is it just me? When did it become good and proper and acceptable to define people by what they can’t do, by what they’re not? We don’t apply that concept to any other section of society.
Here is a definition of the word ‘disabled’ according to the Oxford Dictionary;
(Of a person) having a physical or mental condition that limits their movements, senses, or activities.
Really? Is that all they are, persons limited by their conditions?
Ok, we know that children and adults like Carys are different from the majority, and we have to have a way of referring to them. Don’t we? Because we like labels; they make things nice and clear, and everyone knows where they stand.
Well, this may come as a bit of a surprise to some, but my daughter Carys is NOT disabled. I don’t define her by labels, especially not negative ones. She’s not a cripple because she’s in a wheelchair. She’s not a mute because she doesn’t talk. And she’s certainly not ‘slow’, or a retard because of her mental abilities.
The first time I heard the R-word applied to Carys, I was shocked. I had honestly never perceived her in that way since the day she was born. It shocked me even more that said assessment came from the mouth of a friend. The second time I heard it, I was better able to handle it. (In a firm but polite manner.) The R-word has been denounced and rejected by society, and rightly so.
I don’t like the term ‘special needs’ either. Her needs are not special, they are the same as everyone else’s, to love and be loved, to be nurtured, kept safe, have access to food and toys, a roof over her head, education, to be accepted.
I have heard people saying of her to their children, ‘We have to take care of Carys, she’s special.’ Well yes, she is, but no more special than all our children. I know this is meant well, but have you ever had to explain to your five year old why its Ok for a certain person in his class to pull his hair, because teacher said she (the person who did it) is ‘special’? I have. Not only is that wrong on the teacher’s part, but it is not an excuse for bad behaviour.
I define Carys by what she CAN do; in spite of all her challenges, she has overcome great suffering. She has learned to crawl and walk. She loves music and singing and dancing, and can actively partake. She has the most brilliant smile. She is cheeky and feisty, demanding at times. She laughs… a LOT. And oh, she has an infinite capacity to love.
She doesn’t judge people by the colour of their skin, how they look, what car they drive, or how big their house is. She doesn’t care about any of that. She willingly shares her food and toys. All she asks is a bit of attention, a full tummy, somewhere comfy to sleep, and as many hugs as you can spare.
What she has, is a rare syndrome. It’s called Cardiofaciocutaneous Syndrome. That is label enough. It’s completely true. It’s not insulting. It is a fact. It doesn’t make her special, just different. She’s not a victim of this syndrome, or a sufferer of it, or a patient. She is not impaired. She is not handicapped. It is simply something which is a part of her.
Here is a great quote;
The most appropriate label to use is usually the one given by the parents.
In our case, that would be Carys. Carys is a Welsh name which comes from the word ‘love’ (cara’). I believe it is also very similar to a Greek word meaning ‘happy’ or ‘joy’ (περιχαρής / pericharí̱s). You can’t get more appropriate than that!
Carys, like all people with syndromes, is a human being, just like you and me. I think there are many so-called ‘normal’ people out there in the community who are far more disabled and non-functioning than Carys will ever be.