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.

Not being able to access public transport restricts people’s freedom and limits their opportunities

Guest post from Conrad Tokarczyk. Conrad and double Paralympic gold Medallist Natasha Baker MBE are both from Hillingdon in London. Natasha is supporting Conrad’s campaign to make all their local tube and train stations accessible to disabled people within five years.

In the aftermath of London’s 2012 Paralympics, awareness of disability issues is supposedly on the rise. But access to public transport still remains a major obstacle for disabled people. The effect this has on people’s lives is not being taken seriously.

The term “public transport” by definition suggests that it is a service for everyone. But as many people reading this will know, many stations have large flights of stairs leading to the platform and no lift. This makes it impossible for wheelchair users and people with mobility issues to get around.

In my home borough of Hillingdon in London the majority of tube and train stations are inaccessible to wheelchair users like me, so I’ve launched a petition calling on decision makers to improve access.

Why it it such a big problem?

Conrad at foot of train station stairs
Conrad at the foot of train station stairs

I’ve had to turn down certain jobs which I couldn’t get to using public transport. And it’s not just about work. Many people miss medical appointments, trips out with friends, and have difficulty getting to college – all the normal everyday things they want to do.

Driving is sometimes an option. I drive, and I have a Blue Badge, which should help with parking. But in London journey times can be nightmarish, twice as long as public transport, and parking in central London is difficult and expensive. Taxi rides are also incredibly costly.

Many generations of disabled people have been prevented from leading fulfilling and independent lives as a consequence of poor access to public transport. Politicians need to take action now to improve the accessibility of our transport network. If they continue to dither on the issue, yet another generation of young disabled people like me will miss out.

Where will the money come from?

Politicians often cite a lack of funds as the reason improvements can’t be made, which is why our petition is also asking decision makers to publish the costs of making the UK transport network accessible.

In January this year politicians spent £250,000 on portraits of themselves; last year MP’s spent £13,000 refurbishing the House of Commons Strangers bar; and in 2012, politicians spent £400,000 of taxpayers’ money renting dozens of trees to decorate their offices! I think it’s unfair that the purse strings are tighter when it comes to spending on issues that could improve the lives of disabled people.

If, like me, these acts of self indulgence make your blood boil, please take a moment to sign the petition calling for decision makers to take the views of disabled people seriously.