News and opinions on disability
and inclusion

The words we say

16/9/15 · Posted in Children, valuing people

Having spent much of my career working with words – both as a journalist and then in Communications, I have been reflecting more than ever on the power (and harm) words can have.

I have also been reflecting on the words people say to parents of disabled children and young people.  As the mother of a disabled son, I have learned there is a “different” way that some people speak to parents of children with disabilities.

Some people seem to feel they can say anything.  Questions like “Have you considered putting him away?” have astounded me.  My son, Noah, was not a tin of soup to be tucked away in the pantry or a mop to be stored in the cleaning cupboard.  He was a delightful, engaging, challenging, complex little human being who captured and held my heart from day one.

I have met children I find to be rude, disruptive, obnoxious even – but I would never dream of asking their parents if they considered putting them away.

I remember being pregnant with my youngest child and someone telling me they thought having another child was a good idea; “Because they can help take care of Noah when you die. Then your older boy won’t have to do it on his own.”  I was speechless. Having another child was a gift – not a means of future respite care!

And, the most significant comment of all when my son died – “It must be a relief to you.”  Why?  In what universe is it a relief to have your child die before you?  I do not know if I looked as stunned and wounded as I felt.  The long silence after this pronouncement though may have spoken volumes.

Nearly four years on from my son’s death I hear similar comments made to other parents – and I cringe.  Do people think we – the parents of disabled children – are somehow less sensitive?  Or do they think that by making the comments they do, we  will confess to some hidden desire to be away from our children, to want others to take care of them – or to be relieved they are no longer with us?  Perhaps, what they are projecting is their own response and reactions if THEY were the ones raising a disabled child.

But words can hurt.

There are many battles to fight when you have a disabled child – to ensure your son or daughter has the same rights as their able bodied siblings and peers. But one of the most profound battles is that of having others “see” your son or daughter, first and foremost, as a unique and valuable person.

As Noah got older I learned that if I was to give him the chance to be seen I would have to stand up and protest at those words and comments – not stand back in stunned silence.  And, I did.  Some people, strangely, felt affronted that I chose to correct them when they called my son a “Cerebral Palsy” or “Handicapped”.  “No, he’s a child – his name is Noah,” I would explain, then tell them what he liked and didn’t like.   My goal was education and through that, hopefully acceptance.

I have come to terms with the fact we can offer education – but not everyone will hear the words we speak, or be accepting.  I have learned not to cringe visibly when I hear people talk to other parents, saying things they wouldn’t dream of saying to mothers and fathers of able bodied children.  But I have not given up on correcting – and challenging the words people use.

Our language, after all, is a reflection of our thinking – and our thinking a reflection of what we both feel and say.

So, my challenge to those whose children don’t have disabilities is to think first before you speak and ask yourself why you would offer a comment or question.  Could it hurt? Or would it add value to that mother or father to hear your thoughts said aloud? If it might possibly hurt them and add no value to their life or their thinking, then ask yourself if silence might just be a better option.  Because silence, just like words, holds power too.

Joy Gunn
National Manager Quality, Innovation & Development
Deputy Chief Executive

2 Responses to “The words we say”

  1. A wonderful article and very true of the same experience I received when my two youngest children passed away. Well done.

  2. Roger Loveless says:

    Unfortunately it extends well beyond childhood. So many people will speak to the able bodied carer or spouse in preference to the person in a wheelchair who can easily answer their questions directly. I got some interesting reactions when presenting passports when travelling with my wife, especially when the counter is way up there and they need to lean over to see me!!

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