Tag Archives: Book

Jess the Goth Fairy

Guest post from Jo, who is creating a book with her daughter Jess.

Meet Jess

Jess holding a medal
Jess at the National Special Olympics last year

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

Cartoon drawingWhilst 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.

Cartoon goth fairy
Jess the Goth

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!

Future plans

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!

Find out more about the book and the Kickstarter campaign.

What every disabled person needs to ask themselves

Guest post from Phil Friend, Co-Author of a self help book for disabled people, employers and friends called  “Why are you pretending to be normal?”

Are you pretending to be “normal”?

Phil Friend
Phil Friend

A long time ago I went to a meeting during which I was asked, “Why are you pretending to be normal?” I’m a wheelchair user and my disability is pretty obvious, so I was really intrigued by the question.

What the questioner explained was that although my disability is obvious I acted in ways, which somehow denied its existence. The questioner pointed out that I ought to be seeing my disability as an asset not a problem. So here I am all these years later working with disabled people and asking them the same question!

We all know that disability can affect anyone at any point in his or her life. The impact is usually life changing for the individual concerned and for all those connected, family, friends, employers and colleagues. Given that most disabled people are ’not visible’ it is often extremely difficult for them to discuss the issue with others so there is a tendency to cope rather than manage the impact effectively.

Do you want to manage your disability positively?

I have worked with a colleague Dave Rees for many years running personal development workshops for disabled people. The primary objective of the programme is to encourage the disabled participants to take control of their lives by understanding their impairment and its impact on them and those around them.

Our book sets out to explain the social model of disability and, in the process, sends the central character Chris on an imaginary journey – that mirrors the psychological journey upon which many disabled people embark in order to feel comfortable with who they are and what they are.

For example, one conversation has George explaining to Chris the difference between disability and impairment, when to discuss it, how to discuss it and when not to discuss it. Angela suggests that we are all ‘normal’ and goes on to push the notion of the diversity of normality. Jan points out the differences between the social, medical and charity models of disability.

Are you feeling frustrated that people don’t understand?

Chris comes to realise that, “part of the solution is changing other people’s view of me when they know I have an impairment”. Chris’s final interlocutor is Paul; here the emphasis is on the idea that the language we use and the way in which we convey the message is vital – something Paul describes as ‘the music’ – together with ‘the dance’ – the body language, facial expressions and other subtle indicators that are often a guide to communication and meaning.

We hope that this book does justice to the hundreds of disabled people who inspired us to write it. We hope that you will read it and embark on your own journey, which will end when you see yourself as an asset and not a problem.