Guest post from Jo, who is creating a book with her daughter Jess.
Jess is such a special person, I know I am her mum, but she has the ability to make people smile and just wants to help others. She has changed everyone’s life in the family for the better. Jess has learning and physical disabilities and I feel very humble to be her mum and have watched her cope with many situations over the years.
She is the inspiration for a lot of things in my life. I have always wanted to put pen to paper about Jess’s life and never known where to start. Rather than writing about the constant battles with the authorities (the never ending red tape, the moving goal posts), I thought that there must be a better way to tell people about this incredible young lady.
The Goth Fairy
Whilst I was looking at some of the cartoons that Jess had drawn, the idea came to me (one of my very few brain waves!) – a fairy.
Jess loved the idea. So we put our heads together and came up with “The Goth Fairy”.
Jess just wants to be treated the same as everybody else. She wanted to put across her feelings about what happens to her, such as being stared at or not being able to do things that most people can. We hope people who will read the book will realise that it OK to be disabled and it OK to be different.
Jess the Goth Fairy has learning and physical disabilities, just like the real Jess. Wings that don’t work very well, so flying is scary and landing is a nightmare! She looks different, doesn’t do pink or wear dresses. Having a normal life as a fairy is very challenging for her.
Unfortunately we can’t create this book for free. The book needs illustrating, proofreading, copy-editing, marketing and much more, so we started a Kickstarter campaign to fund the estimated £6,000 we need. Thanks to some incredible support – we’re almost there!
Jess would like to take the book into schools, colleges, and disabled organisations to read the book to anyone who would like to hear and talk to her about her life. I’m happy to support her but I hope somebody, such as her care provider, will also support Jess to do this on her own.
I know life will never be easy for Jess and things will probably get harder as she grows older. The thought that her dad and I won’t always be about to protect her fills me with fear. The last two years I have had ill health and been diagnosed with ME, and I have experienced in a very minor way, the prejudices that Jess goes through.
We hope the book will teach people about life with a disability. We want to show that though very hard at times, with the correct support, someone like Jess can achieve a lot and give so much to the community they live in!