My dearest (I think she wouldn’t mind me calling her friend) Deborah has just posted the following on Facebook:
‘I am thinking of making Isabella a badge to wear, it would say the following:
“My name is Isabella. I am 4. Past 4 and 1/4 and heading for 4 and 1/2. I can hear you. I can understand you. I just cannot talk to you. So please do not talk to me like I am a baby!!!
And I understand exactly how she feels. To be honest I have always found baby talk irritating anyway and it usually results in kids with a winy voice… but I shall not pass judgement for this is exactly what I’m trying to ‘raise awareness for’…
Instead of going around it the usual way, and explain what Isabella has and how she is a little girl who suffers from a horrible disease I’m going to try to bring it closer to home in a really easy way.
You, who are reading this, able bodied and hopefully healthy, try to imagine for a full 5 minutes not to be able to talk, or walk, or see clearly. So close your eyes if you must, start by asking someone to talk to you as if you are a newborn, remember you can’t express yourself via language or movement, let them go on for a bit, take it seriously, please.
Do you feel like an idiot yet? Is it nice? Would you rather this person wasn’t talking to you? If this was life, if you suffered an accident or had a terrible disease that lead you to such disabilities would this be the way you would like to be treated? No, I am certain no one would! I’m certain you would, if this exercise lasted long enough, break your silence and tell this person to ‘shut up’! But Isabella can’t, so she won’t and if she could she would probably be too polite to do it because she is lovely too!
No one chooses to be ill, to have disabilities, to be unable, but it’s everyone else’s choice to treat people with respect. I can assure you that Isabella and those who suffer from disabilities and limiting illnesses will never be disrespectful to you, that if they could talk what goes on their mind you would be astonished at their wisdom and their beautiful words, because they see the world differently, they don’t have malice, prejudice or any pre made judgements.
Next time you come across Isabella, or my daughter Amelie or another child or adult with special needs treat them with the attention and respect they deserve, touch their hand, stroke their head, read them a book, if you are unsure how to act just ask their carer, ask what is acceptable, if they can hear, see, what they like and don’t like, just as you would with any other child. Failing to do so you may risk them thinking that you are an idiot…
You also wouldn’t want to make a parent feel the way my friend Deborah and I many times have, would you? It’s a lot worse than people staring at your child having a tantrum. Our children are special they are not stupid!
I am going to take a risk and speak on everyone’s behalf here – Isabella, Amelie and the other children with special needs and their parents appreciate everyone that makes the effort and who shares this message.