When I was born in 1990, doctors and nurses couldn’t tell my parents much about my disability. I had been deprived of oxygen at birth, but the long term damage was uncertain… they just had to wait and see if I would walk, talk, or be able to live an independent life. “I just want Rosie to be able to read,” apparently said my Nana, Lavinia. “If she can read, she can go wherever she wants!”
As I went from baby to toddler, it became evident that my disability was affecting my mobility and speech. I couldn’t walk and dribbled like a constantly hungry but adorable puppy, but I never seemed to be sad or frustrated that I couldn’t run and play like other kids. I would be the one who sat in the corner at every birthday party, eating alone a large bowl of baked beans… happy as Larry!
I learned to read pretty quickly too (ooh, Lavinia was over the moon), and it quickly became a routine that I would go to bed at six, read for two hours, and snore my butt at eight. I walked slowly, I spoke slowly, but I read fast! When I was seven, I was seventeen and a half to read. Don’t ask me how they calculated “and a half” … is it because I could read the word “bewildered”, I wonder?
My favorite books were by Jacqueline Wilson, and I also had a soft spot for Meg Cabot’s Princess Diaries series. Basically, whatever I could get my hands on, I read it. But looking back, I would never read anything about disability. There have never been characters with disabilities, let alone being the heroes of the stories. I never really thought about it at the time. Even though my cerebral palsy never made me feel disadvantaged or inferior, it was extremely disheartening and demoralizing not to have anyone to admire, or even to relate to. Growing up, I could never imagine myself as an adult, or even leaving school, because there was no one in the books and in the media that I could admire and think, “If they can do it, I can do it ! “
And on the rare occasion that a disabled character appeared in a book, he was the victim (like Colin, from The Secret Garden… and in fact, it turned out he wasn’t even disabled!) Or the villain. (Captain Hook from Peter Pan). There was no one like me… a typical girl who was just a little wobbly.
Nowadays, disability is more represented in the media, but when it comes to children’s literature, these characters are still few. This is how Edie was born.
I wanted to create a character who, like me at the age of 11, struggled with all the ‘normal’ pre-teens issues like starting a new school, making friends, finding out who they are and freaking out about it. of that long-awaited first kiss. But when you add a disability to the mix, you run into a huge pile of additional concerns: does a disability define them, will life be harder for them, and how do they come to terms with being different without it. let them consume?
I have high hopes for my book The Amazing Edie Eckhart. I hope children with disabilities will read it and feel seen and represented in a way that I never did when I was their age. I hope non-disabled children will read it and realize that just because a person is a little different it doesn’t define who they are, and everyone has their own challenges that they face every day.
But more than anything, I hope my book will encourage more authors to write about disability. We can’t tick a box and move on just because someone has written a book about a disability. A disability is not a personality type, and Edie does not represent all people with disabilities. Knowing that more than a fifth of people in the UK consider themselves to have a disability, this is not fairly represented in the books.
It’s my dream that one day, in the not-so-distant future, we will live in a world where we can walk into a bookstore or library and meet dozens, if not hundreds of books that feature a multitude of different characters. who are bright, funny, silly, flawed, silly, motivated, intelligent, selfish or lazy… they also have a disability.
I would hate to speak for all people with disabilities, so to end this article, I’ll just speak for myself, Rosie Jones, self-proclaimed wobbly person and self-proclaimed Gold Star legend. I’m not asking for the world. I’m not asking to be pained, or praised as an inspiration… I’m just asking to be seen.
Well, I’m going to read a book and eat a bowl of baked beans in the corner. Bye!
This week I have been
Yes, “cheesing” is a verb, thank you very much. “Cheese” means spending hours and hours at the table with loved ones, copious amounts of red wine, and the essential ingredient: cheese. Crackers, chutneys and pickles are not essential, but preferred.
It’s the perfect way to unwind after a long day at work. And what is my favorite cheese I hear you ask? Excellent question! I like blue, natch and goat a bit, but my number one is a manchego. All this cheese talk is making me really hungry now.
This seems like an obvious choice as a stand-up comedian, but, in fact, I haven’t acted very often recently; Covid bleeding put an end to live concerts, didn’t it? I can’t tell you how great it was to play again; I fell in love with the performance again. I did a lot of gigs online during the lockdown, but it’s just not the same when you play Zoom in front of a bunch of people in their living room eating noodles, putting babies to bed, or making noodles. lasagna. It was happy to be in the same room with the people. I did my first concert without social distancing on the weekend and it was so beautiful, I felt quite emotional. It was nice for the crowd to feel like a laughing beast again, instead of a lot of different pockets of people, laughing at their own pace. It’s so good to be back, baby!
No judgment here, thank you very much, but I think I might be the only person in the world who still plays Candy Crush. You know what, I love it. This is the one time in my day that I properly log off and focus on crushing those candies. I’m pretty mean, and I sleep with my phone next to me, so when I wake up in the middle of the night (from the last cheese dream), I treat myself to some Candy Crushing, and I swear that sometimes J play it while sleeping. I am now at a ridiculously high level – 5,567 – and I don’t know whether to be proud or ashamed.
Rosie Jones’ The Amazing Edie Eckhart is out now (Hachette Children’s Group, £ 6.99)