I believe that we should never make a negative comment about other peoples' appearances. But I know children can be curious. They can be cruel too.

These last few weeks I've seen a couple of online friends comment on the way other children react to their children who have Ichthyosis. Heartbreaking.



Another friend said a child in a chicken shop told her that her baby's face looks disgusting. She added "my heart breaks for my baby. Teach your children some respect!". So true.

Courtney and I discussed the need to prepare children for meeting people with visible difference, which inspired this post.

I also got some great comments from contributors to the Ichthyosis Awareness Month blog project.

From Peggy:

And from Jaime:

These responses both moved me to tears and also made me think about children's reactions to my visible difference.

Encountering children often fills me with dread. It brings back memories of being at school. I want to avoid children's direct honesty. Even more so, I don't want to be the scary person they see. Children are curious, but they can be cruel too - even if unintentional. And their words and actions can impact adults and children the same way.

I once stayed with a family who I thought should have known better. A family who has known me my whole life. They should have been prepared. For two days, I endured two children - aged six and eight - not looking at me. Being afraid. Not speaking to me unless prompted by their parents. It was tiring.

Their cuteness waned fast. I spent much of the time being polite, smiling my discomfort away, trying to make conversation. I asked the children's parents if I should explain about my skin. No, they told me. Then I asked them straight out, in front of their parents, do they want to ask me anything about my face? No. No. And still no conversation was made. In the end I told them, "I'm not talking to you if you're not talking to me."

Their parents put their behaviour down to shyness. I've seen the reactions of enough children to know they were not shy. What made it worse was that there was someone else that the children had not met also else staying over. The children did not react like they did around me with them.

What I had hoped was that this family would have prepared the children for my visit. I had hoped (especially in this age of social media) they would have seen my photo and been encouraged to ask polite questions. I had hoped that they were a little more appreciative of diversity. It was a difficult stay. I especially find it difficult that I didn't feel that I can raise this issue with the children's parents - I was a guest in their home.

But my experiences have not always been bad - like I have written about here and here. I also have a great memory of a time at my day job - my manager had her then seven year old nephew and his parents in at work one day. I'd heard lots about him, especially his intelligence and confidence, and was excited to meet him. (I expect him and his parents had heard a bit about me too.) We chatted for about 15 minutes - about lots of things like school and what he was going to do when he's 18. I could see him looking at me, curious. I smiled, and continue our conversation about everything else but my skin. When he left, he said "bye Carly", waved his hand around his face, and said "I hope your face will get better soon". It was such an emotional moment for me - he was clearly concerned and very thoughtful. I didn't want to break his heart by saying it won't get "better". And so I said "thank you".

I bumped into a good friend of mine at the local supermarket this past weekend. While she usually sees me dressed up for work, I commented to her that I always see her outside of work when I'm looking daggy - in my tracksuit and beanie and my face at its reddest. Sometimes I have scale in my hair. Her beautiful kids - aged two and three - smiled at me from the trolley, saying "Hi Carly" through chubby-cheeked mouthfuls of biscuit. On reflection for this piece of writing, I realised that her kids have never been wary around me. They've spoken to me, given me cuddles and laughed with me like my difference doesn't bother them. I sent her a quick text telling her that her kids have never seen me as different - and I am so thankful for that. She should be proud.

I do believe in educating children about diversity - after all, it's future generations who will change the world.

Children are curious about people with visible differences - because it's unusual, often a new experience. And children are also fearful. I think fear comes from people with visible differences represented as characterised villains in movies - they're people to be scared of. Think Scarface or Freddy Kruger or the witch in Snow White. Curiosity comes from encountering the unusual. I also believe negative, fearful perceptions of people with disabilities and visible differences come from voyeuristic, exploitative shows such as Embarrassing Bodies (more on that soon!) and the way diversity is depicted in the media, as well as how children's parents talk about and expose their children to diversity. I read this piece about a child's reaction to a woman in a burqua and was surprised that a mother just didn't know what to tell her child. Don't read the comments, just don't - it's the bottom of the Internet.

So what would be my advice for preparing children for meeting a person with a visible difference? (So I'm not seen to be providing all the advice to parents without being a parent, some of my friends who are parents weighed in too.)

Tell your child that everyone is different - people come in all colours and sizes and have lots of different skills. Talk to your child regularly about diversity at home. I am a strong believer that the responsibility to teach diversity lies with the parents.

Rachel, a mother of a child with Ichthyosis agrees. "I think it is the parents place to teach their children, the onus should never be on the person with the physical difference." Alicia, my friend from Uni, who has two little ones says "How does a child know that someone else's difference isn't the norm? Most of the time kids learn from what they are exposed to, good or bad. If my kids asked why Carly looks different i would try to explain but otherwise Carly is just like everyone else. I would like to encourage my kids to think about a persons character rather than what they look like."

Danielle says "as a family of 5 (me, my fiance and 3 children ), we accept and embrace 'differences ' both myself and my son are aspergers, so as a family we embrace difference, we try to educate our children that sometimes people can 'look' different but they don't 'feel' different, that everyone deserves love and acceptance as they are. Recently my son piped up in a conversation with his mates (he's 10) they had been speaking about a girl with a visible dark brithmark on her face he said 'she's still awesome who cares about her big freckle'. All 3 of my children say 'you can't decide who you love it just happens' when they hear of people in same sex relationships .... when I hear this I know I've done a good job."

Don't make something up as an answer for your child.

I hate a parent telling their child I've "been stupid in the sun." I'd prefer them to say "I don't know honey, maybe this woman would like to tell us about why she's got a red face?"

Prepare your child for your friend or visitor who has a visible difference. Show them a picture. Tell them your friend may do things a little differently to them - like using a wheelchair because they are unable to walk, or put cream on their face, or use a device that helps them to see, hear or talk. Tell them it's ok to ask questions. Tell them it's not ok to be rude.

A different Alicia told me: "I explain to my kids that we are all different. We all have something we don't like about ourselves. Something's aren't obvious some are. We shouldn't have to hide our differences or feel bad or ashamed of them. If we accept others as they are, people will accept us.

We have several family and friends who are vision impaired. I ask my kids do they think it matters to them the colour of my skin, or if one side of my face has dropped, or if I walk funny? Or does it matter how I treat them and the kind of person I be.

My son once asked me on a flight next to an Indian girl why her skin was dark and his wasn't. So we asked her about her heritage. Her parents were from India. She told him nearly everyone where she was from had darker skin. He asked why his wasn't. We explained it."

Ask your friend with a visible difference about the condition before you introduce them to your child. Ask your friend if they are ok to explain their visible difference.

Don't provide an excuse if they are rude or scared - like shyness.

If you encounter a stranger with a visible difference, encourage your child to say hello and preface the question with "I hope you don't mind me asking."

Don't be offended if I don't want want to explain my visible difference. Just like when adults approach my, children approaching me - and making a noisy scene - can be tiring too. It's a fine balance!

Laura told me a lot about how she encourages her children to ask questions, and when I said that questions can be tiring, she said "just because they want to know, doens't mean someone is emotionally available to be asked." Yes!

What about whether the person with a visible difference should speak up and explain the way they look to curious or rude children?

I understand that it can be embarrassing if your child asks questions about someone's visible difference. The shrieking, the repeated whys, the candidness. It can be hard for people with visible differences to answer these questions, especially if they're not confident. Don't be offended if a person with a visible difference, or their parent, find an innocent question hurtful.

Sometimes I wonder if parents want me to speak up if their child doesn't ask me about my skin directly.

Most of the time I smile at a curious child and then I usually say "everyone is different, I was born this way - like you were born with your blue eyes". Most of the time they understand and move on.

I put the question out to my Facebook friends and Twitter followers:

Parents, how would you like people with visible differences to explain their difference to your child?

Cheree says "Yes! Definitely speak up! If we were to walk past you and you overheard my kids say something about your appearance it'd probably make them stop and think again about saying something. I try to educate my kids that some people do have visible differences but that doesn't mean they are any different from us. But hearing it from someone with a visible difference might make them listen more and also understand how staring and words about appearances can hurt."

Alicia adds "I can teach my children acceptance and respect for differences and people but I can't always answer why people have those differences. I often explain to kids who are staring at me that I have Parkinson's Disease that makes me shake and walk funny. So I definitely encourage speaking up!"

People on Twitter replied succinctly:

EatShootBlog: Honesty + candidness + further explanation/discussion depending on age of kid and their questions.

newsflock: honestly, scientifically.

Hibblej: kids especially younger one's like my 4yo will ask all the innocent but awkward questions.

spillihpzil Honestly & matter-of-fact-ly. Kids understand more than some ppl give them credit for. Just because a body looks different doesn't mean the person is some exotic freakshow. Bodies are just different.

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I dont want to parent your child. I am happy to answer questions, and I realise children can learn just as much from a stranger as they can from their parents. But I will speak up if your child is being rude or cruel, or pointing, staring for an extended period of time or laughing, just like in the examples written about by my friends affected by Ichthyosis above.

Additional resources:

Talking to people with visible differences - my blog post.

Changing Faces - handling other people's reactions.

Happy Child - a perspective from a mother of a chronically ill child who just wants to be included.

Easy Peasy Kids - a Kind Eyes empathy initiative.

What advice do you have about teaching children about diversity?