First published on the Firefly blog
If you have a child with a disability, you’re certain to run into the cheerful declaration: “you are your child’s voice”. You can find it on t-shirts, coffee mugs, jewellery and many, many memes and blog posts. Every time I see it, I cringe.
My daughter Z is seven and she is non-verbal. This has not stopped her from being free with her opinions, communicating her needs and giving us signs (such as ear-scratching, hair pulling, facial expressions and making noise) about whether or not she is happy since she was a baby.
All these signs that Miss Z gives us are great – we couldn’t get by without them – but they are limiting.
Let me give you an example. One afternoon, Z started to get grumpy – grumbling and pulling her hair. We all knew she was telling us she wasn’t happy. I assumed she wanted to be repositioned, so I rolled her over. She continued to grumble. Her sister thought she was bored, so changed the tv channel.
Her father figured she must be cold, so put a blanket over her. The grumbling continued for a few minutes and then Z fell asleep. Was it the blanket that made her happy? Or was she tired and finally gave in to sleep? Or did she just give up trying to tell us what she wanted?
This is the moral of the story: even as her mother / sister / father, even as people who love her dearly, even as those who have spent more time with her than anyone else on the planet, we don’t always know what she is thinking or what she wants to say.
So, how can we be her voice?
Let me give you another example. Miss Z was dragged along on a shoe shopping trip for her sister. She was clearly bored, but waited patiently while her sister tried on several pairs of shoes. Afterward, I said that because she was so good, she could choose a reward – a little stuffed animal.
Now, Z has always loved bunnies. Her room is full of bunnies. And recently she has developed a love for cats and pigs, too. However, when her sister and I enabled her to choose her own toy in the shop, she very clearly selected the pink unicorn.
Wait – the pink unicorn?! What?
Yes, Z has suddenly decided she likes unicorns and the colour pink – two things she’s never shown much interest in before. But given the opportunity to choose her clothes, she wants to wear the pink t-shirt. Given the opportunity to choose her bedtime story, she wants “Thelma the Unicorn”.
If we hadn’t taken the time to ask her opinion, we never would have known. I would have bought her the cat or the bunny and she would have gone home unhappy and not feeling rewarded for her good behaviour.
What is the moral to that story? Take the time. Facilitate communication and be her partner – not her voice – in helping her to communicate her own thoughts and feelings. We’ve gone through several different communication systems until we found one that worked for Miss Z, and we’re constantly trying to improve and expand it, in order to give her the greatest opportunity to communicate to the best of her ability.
I will admit that using a communication system can be pretty boring and inconvenient. It takes a long time to ask a question, and even longer to get a response.
But, without the effort, Miss Z wouldn’t be able to tell me which character she wants to dress up as for Book Week. She wouldn’t be able to tell her teacher that she is grumpy because she is tired or needs a change of position. She wouldn’t be able to demand long hair, when I really, really want to cut it short. These are the things that are important to my seven-year-old daughter with a disability, and without helping her to communicate, I wouldn’t know any of it.
We are not the voice of our disabled child. Please, please don’t claim to be able to read your child’s mind.
Instead, be an advocate and a communication partner to help your child make their own voice heard. I promise, you won’t be disappointed.
Except maybe when they choose the pink unicorn.