‘My Brudder is Bisabled’

This is an elaboration on an Instagram post from May. You can follow me on Instagram for cute photos of my kids and occasional thoughts @jessmox

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Molly helped me as I was putting Ben’s AFOs on one morning (AFO: ankle-foot orthosis – a custom made plastic splint to support the foot and ankle and keep them straight) by picking them up off the floor each time Ben kicked them off. As she climbed back up, she asked why Ben was kicking her in the face? We had a chat about Ben being disabled and I told her that her brain is in her head and it tells her legs how to move, and the messages between Ben’s brain and legs get confused. She’s 3. She listened and moved on.

I think so much of the cause of people feeling disability is unfortunate, bad or alien is because they don’t have the language to discuss it. If adults don’t use straightforward language to talk about disability with kids, and rather refuse to discuss it or use opaque, unfamiliar words, it reinforces the idea that there is something to be scared of or intimidated by. They get the impression there is something awkward that parents don’t want to discuss. Kids are never too young to be given the words to describe different kinds of people. These conversations can be just as cute as any others: ‘my brudder is bisabled!’

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I don’t pretend to speak for everyone on this issue. The rich variety of humans means people like to be called different things, but disabled is a descriptive term not a slur, and it is the most appropriate word to describe Ben along with boy, child, white, male and awesome. Disabled is a political term used to describe people who are disadvantaged and excluded because of their impairments.

Other people would like to be called other things, or parents would like their children to be called something else. I have friends with children with learning difficulties who would describe their children as having special needs. Some adults would not like to be described as having ‘special needs’ since they would say their needs aren’t special, they are specific.

I have read pieces by disabled people talking about how horrible it is to be stared at, and other pieces saying parents should never tell a child to look away from a disabled person – that this compounds a sense that there is something to be embarrassed about. I know that having a child who points and stares at someone, possible saying something deeply uncomfortable very loudly, is awkward. It can be embarrassing. I also know that having a child who is stared and pointed at can be painful.

But most people don’t take offence at children. Parents are often embarrassed because they realise they don’t know what the right thing to say is and they know they are unprepared for this discussion and perhaps are realising how little they have taught their children about disability and inclusion. Children are often pointing out difference and asking straightforward questions which can be quickly and easily answered.

If you have tried to educate yourself in the terminology of disability and taken time to hear disabled people’s stories you are likely to be less intimidated by getting language wrong. The best way of dealing with all of this is to ask people, or parents, what words they would like to use. You don’t need to know the correct word to describe someone to say hello to them.

I have explained to many children that Ben is disabled – that his body works differently and he cannot always control it. I have answered questions about why I am connecting a tube to his stomach and pushing water through a syringe, or why Ben is dribbling, and how his eyegaze computer works. When children ask these questions their parents often look panicked, but kids are inquisitive and I am happy to explain all of these things because none of it is problematic. It’s all really quite straightforward. A lot of it is technologically amazing.

Molly had a friend come to play today and she showed her some teddies. One of them has a gastrostomy button like Ben. ‘This teddy is disabled’, she said as she showed her friend, ‘and this one is a monkey.’

There’s nothing to be scared of. If in doubt, smile and be kind. Let’s raise our kids right.

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