Talking To Your Children About Disability

Last week, on the bus, we sat next to a woman with a facial disfigurement, and my stomach was in knots in case either Joe, nine, or his eight-year-old brother, Harry, said something. They didn't, but I spent the whole journey wondering how I would deal with it if they did.

Susan Walters was nervous when she noticed her son Ben staring at a teenager with Downs Syndrome. She says, "He didn't say anything and I could tell he was just curious. I told him it was rude to stare at people but he then asked lots of questions about why some people look different and what makes someone disabled and I got very confused trying to explain about chromosomes and genes."

My friend Sally has a skin graft on her face from having a birth mark removed as a child. Since she often works with children (she runs her own theatre academy), I asked her opinion. "I don't get many comments," she says, "but if I do, I happily explain. It's human nature to see something different and wonder what it is. One boy asked if he could touch my face, so I let him, and then there was a line of kids wanting to feel it!"

Whenever this kind of situation arises, I struggle to know whether it's best to explain to the child in front of the person they're looking at, which seems rude to me, or whether to ask the person directly.

Father-of-two Scott Pack thinks that if a child has questions it is best to answer them there and then. "People in the position of being stared at are usually used to it and appreciate being spoken to directly. That being said, a talk at home with 'Do you remember that person we saw...' can often avoid it in future."

Emma Crees, who has Cerebral Palsy, says she's more than happy for kids to ask her questions. "I'd rather hear a parent explaining about disability to their child than shushing their questions for fear I'll be embarrassed.

"When that happens I always assume that either the parent is embarrassed or they feel that disability isn't something we should talk about. And if I hear them say 'We'll talk about this when we get home' I always wonder if they actually will or will it get forgotten?"

Frances has Epidermolysis Bullosa (EB), a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. "Because of my wheelchair and because my condition is quite visible on my hands it is difficult for me not to be noticed.

"I see kids prodding their mum or dad and they're probably asking what's wrong with me. I've had people ask about my condition before but not many - perhaps because I look too severe? I have DEBRA leaflets in my wheelchair bag as it saves time and it has info and the website link if they care enough to find out more."

She adds, "I have found that some parents have pulled their children away from me in the past - that's upsetting and insulting as I'm worried they think I have something contagious or I look weird."

Obviously most parents wouldn't pull a child away and will try hard not to be offensive or hurtful, but how many parents - or children - would feel comfortable approaching a stranger to ask about a disability? Even if you feel it's the most appropriate course of action, it's hard to know whether they're going to be pleased you asked or irritated by the interruption.

Emma says, "You need to judge if they seem approachable or not. And remember that unapproachable might just mean taken by surprise or having a bad day not doesn't want to talk about it."

Frances agrees: "It is totally dependent on where I am, what I'm doing, who I'm with... I wouldn't mind being asked if I was alone somewhere nice and probably in a relaxed mood anyway, but if I was out with friends or certain family (who would get annoyed at people asking) then it's not so great."

Children are naturally curious, of course. As Sally says, "I absolutely understand that the only way children learn is by asking questions. It's human nature to see something different and wonder what it is."

But Emma warns that you should also always make sure your child is actually asking what you think they're asking.

Lucy San Ingham says, "My daughter pointed at a disabled woman being pushed in a wheelchair and said, VERY loudly, 'Mummy! Look!' I was embarrassed because the woman's carer had obviously heard, but then Lotta added, 'She's got the same bag as me!'"