|From left: Me, my sister, my dad|
These pictures are my family. My red-haired freckled father, my white mother and my blonde-
haired sisters. As you can see from these pictures, I don’t look a heck of a lot like the rest of my family. My mother and my sister, however, are two peas in a pod. While you see my hair as blonde in a lot of my profile pics, it’s actually naturally very dark brown.
|My mum and me|
Growing up, people used to regularly speculate if I was adopted. People got more brazen about this as I got older and people regularly said I was the Aboriginal milkman’s daughter. Lots of people wouldn’t believe that my sister and I were blood siblings. It caused a lot of angst for me.
But the worst experience for me was when I was in primary school. I clearly remember being teased by some white girls for the colour of my skin. They harassed me, teased me, and told me that I was a piece of shit that came out of the toilet because I was an aboriginal, even though I wasn’t. They were saying with that teasing is that I was dirty, filthy based on the colour of my skin. What I understand now is that the teasing I received was only a small glimpse at the racism that a person of colour encounters. I was probably not subject to more because the rest of my family looked so white. But if we had more diversity in books, maybe I would never have been teased, and maybe many other children who are of colour would not either. They would be seen as friends and classmates instead of a stereotype.
I have a mental health issue. I suffer from anxiety. Just last night I was on the phone to a hotline having a psychologist talk me through an anxiety attack.
For some reason, this is a condition I am confident in talking about. I understand why it does to me. I even know when my thoughts are spiralling and rationale thoughts try to poke through, but they don’t win out most of the time. I make myself physically ill with when my worrying takes over. I also know that my anxiety is only a drop in the pool of mental health issues. So far I haven’t had people be prejudice against me for my anxiety, but I know that it’s a condition I’m not alone in and that having a higher representation of mental health issues in books will help people cope, both people with the condition and their family members.
At age thirteen, my oldest son developed complex-partial epilepsy. Most people have heard of epilepsy, but a lot haven’t heard of complex partial, or probably realise there’s around forty different types of epilepsy.
In my state of Queensland, one-in-fifty people have epilepsy. But I bet you one-in-fifty main characters in books don’t.
For my son, this diagnosis was devastating. He was excelling at his chosen sport, he had achieved dux of the school the year before when he graduated primary school and life was good. Now he had a medical condition that was triggered by stress. Not the best thing to be facing in your teenage years.
His seizure progressed to be multiple times a day on a daily basis, to the point we had to pull him from school because he was a danger to himself and others. He’s had them riding a bike, crossing the road, at the top of the stairs. and many other dangerous situations. He once had a seizure on the treadmill and came to covered in blood.
When his condition hit, he was dropped from representative sides with certain organisations. He had to pull him out of most sport as he was putting so much pressure on himself to perform that he would trigger seizures. He even had an official pull him aside and say he didn’t get picked in a lower rep squad because of this head issues, even though then we had the seizures under control with medication. He also can’t remember most of one year of his life as the seizures impact on the memory part of his brain.
Even though I tried hard to educate people on his condition, people still regular do things that could exacerbate his condition. Not for a minute do I want my son to have special treatment, but if people treat him like a human being then there shouldn’t be an issue.
Another problem we’ve had is people not understanding his type of epilepsy and the consequences that come with it. He’s had a seizure in front of teachers and they didn’t know he was having one. They thought he ill and was going to throw up. They didn’t realise he was having a seizure and that he wouldn’t be with it for the next five to ten minutes and they let him leave the school grounds while he was still in his recovery period. I supplied all this information in a medical alert sheet to the school, along with this video below to help them understand the seizure when they saw it. I still don’t blame them because I know how easy it is for people to stereotype epilepsy and not understand.
As time has gone by my son has found more people coming forward and telling him that they have, or have had, epilepsy. But when he was first diagnosed, he felt so alone and so isolated. We need more diverse books so that people with medical conditions can read stories about main characters they can relate to, so they feel like their story is being heard. And maybe if there were more books that included characters with epilepsy then his teachers would understood what they were seeing when he had a seizure and how their actions could trigger a seizure for him.
There also needs to be stories from the perspective of family members of someone with epilepsy. The impact on our lives was huge. Even though it’s now our normal, there was a lot of adjustment required. And I know from what people have said to me that they have no idea how it’s impacted on our family. We need books from the perspective of family members of someone with epilepsy and other medical conditions to help with acceptance and understanding.
I have three books planned that deal with epilepsy. The first, which I am part way through writing, is a science fiction where one of the main characters has epilepsy and his condition is actually something that can help save the day. The second is a contemporary from a girl with epilepsy and her sister and focuses on the impact on them both. The third is the least fleshed out, but I want to write something from a mother’s perspective.
With the internet came the ability to connect across countries, and yet I was told by a Big Five editor that they mainly wanted stories with a UK or USA setting. But if you ask the readers, they want to know about other places: Japan, Australia, India, Africa. And publishers should answer this call with diversity in setting.
As well as this, medical conditions and mental health issues don’t stop at boarders. These are universal issues that transcend countries. Showing main characters from various cultures with these type of conditions and set in a variety of locations will help people develop understanding and create acceptance.
Please share your stories in the comments and what you’d like to see more of in the way of diversity in books.