Celebrating Dwarfism Awareness Day
October 25th marks a special day on our calendar. It’s Dwarfism Awareness Day, a day to celebrate our unique life journey decided by a genetic mutation affecting my son’s bone growth. It’s also a day to highlight some of the challenges people with dwarfism face and raise some awareness. As my son grows older his growth is slowing down, it wasn’t easy to distinguish he had anything unusual about him when he was born but this is set to change. We’re starting to get more and more confused looks and comments. Although nothing rude as yet I do wonder what my little boy, who is obsessed with all things big, thinks when people exclaim how small he is or how clever he is for a baby. At the moment he doesn’t know any different and people are in no way malicious with their comments but I wonder at what point it might cause him hurt. The temptation is for me to just pretend he is some kind of child genius when they remark how clever he is but I try when I think the timing is right to let people know about his condition and invite curiosity. Curiosity in itself is something I find harmless and believe in most cases should be encouraged. Being a person of average height I wanted to catch up with someone who could tell me what it was like for them growing up and living with dwarfism and how best to navigate the challenges ahead.
Luckily, upon finding out my son has dwarfism, we were invited into a very supportive group of people. I put the word out to see who would be up for featuring in a blog about dwarfism. Rhonda speaks to schools regularly and she is a mother herself and so I really appreciated hearing her perspective.
What is your earliest memory of being treated differently?
Not being believed I was my age by peers in a public playground.
What was your most positive experience with children’s curiosity about dwarfism?
Quote from child during an assembly “So you are small because of the same reason my hair is blonde and yours is brown, we just look the same but are different.”
Have you had any awkward or negative experiences with children and their families about dwarfism?
Worst experience was when I was pregnant, a young teen howling with excitement as they had seen a real life preganant dwarf, the emphasis on the bit I was pregnant like that was the obsurd part….Generally it’s the sadness of either seeing a kid hit for pointing at me or parents joining in with the gawping.
What would you like to tell parents of young children who are curious about dwarfism?
Just let them ask, I don’t mind, I was a child once myself who would ask awkward questions, it’s normal that’s how we learn.
How do you like to tell young children about living with dwarfism and what it is?
I try to keep it positive for children, e.g. Don’t mention the aches and pains etc, if randomly stopped in the street/shop. As soon as a hello what’s your name is passed to and fro, the dwarfism is often overseen. Within school settings I use the cake analogy. All cakes are delicious, but there are many different recipes that make them come out different shape, flavours and sizes..
You are now a mum and your son also has dwarfism. Do you feel growing up is easier for children with dwarfism than it was when you were young?
Yes and no. Social media has made me more aware of the negative humiliation people with dwarfism get. Social media has put people into contact with people with similar situations and has been beneficial ‘you are not alone’……There is better medical knowledge, but sometimes I fear this promotes the fact that children are then wrapped up too much in cotton wool. It’s a big world out there which is not going to change. Learn to get in with it now, or you are in for a shock as an adult.
What advice do you have for average height parents of children with dwarfism on how to handle situations when people are offensive in order to make it easier for our children?
I love this question! Please pick your battles. (This goes not just from parents but for friends) Sometimes I would be ‘out in public’ on a night out with friends in a nightclub and my friends would start on someone. As I got older I ‘must have become immune to stares’, so when a simple point etc was picked up on, it would actually highlight to me that I was different. If my friend or family would have just left it alone, I would have been getting on with enjoying myself. What then happens is I am reminded about the shitty ignorant people or made (reminded) to feel different. …If someone or a group is being obnoxious, then yes, please support the individual with dwarfism. Ask them not to look, that they are being rude, do they have something they want to ask etc….
…….In a nutshell humans are curious, they will look they will want to ask.. If a kid is getting slapped or hushed on the first time they see someone with dwarfism, all this creates for them is the thought and memory that the person with dwarfism is scary, bad, weird, we don’t talk about it….If a kid asks me why I am small and I explain, it usually ends up by the second or third sentence in the conversation we are talking about something completely different (because that’s how conversations with kids go :)….but the kid walks away from meeting me with a positive experience a ‘normalised experience’ of meeting a fellow human.
I have had adults ask me if I live in a little house and use children’s playset furniture to fit it, if I can only have a child with another person with dwarfism. I gauge these conversations and answer with sarcasm if they are really that stupid to believe it. Other people just genuinely don’t know because of bad media portrayal, which is unfortunately perpetuated by fellow people with dwarfism.
