How telling my story created change

Jazz Shaban


Jazz talks to us about her advocacy work and the importance of learning about the stories behind the data.

Sharing my personal experience through storytelling has been very effective. I have been able to turn a disadvantage into an opportunity.

As a writer, I have always believed that if you want to convince someone that change is needed give them a compelling reason.  And there is nothing more compelling than a good story.  

As a writer with a disability, I have a lifetime’s worth of personal experience to bring to advocacy. I’ve realised the power lay not so much in the data collected, but the stories behind the data.

I have been working in the international development sector for 20 years. But, I actually have a media background. In 1991 I was offered a place at Northumbria University to do a degree in media production.

The power of storytelling

The course was in a building that was not wheelchair accessible, despite it having a disused lift shaft. The university would not spend £60,000 to convert the goods lift into a passenger lift and install a ramp at the entrance. This was due to the lack of disability discrimination data, because no such data existed then. 

The game changer was a newspaper article about mine and other's personal experiences. It highlighted the discrimination we faced in Newcastle because of a lack of inclusive policies and resources. 

I learned an important lesson from this experience: the power of the storyteller. Yet, it was not until I started to write my first book that I discovered that the challenges I faced were not unique. They were just experienced differently.

Writing my novel

While being a novel, ‘Road to Damascus’, is actually a collection of personal stories from two girls who shared the same parents. Apart from our Jordanian background, everything about mine and my sister’s lives was different.  

I was born and brought up in the UK and she was born and brought up in the Middle East. I have a physical disability and was sent to a special school in Oxfordshire. Suzan, did not have a disability, was married at 16, lived in Damascus and was not allowed to work or drive.

For both of us, access to good healthcare, getting an education, finding a job, travelling from A to B or living independently was not a given. Yet the combined effect of our personal stories was a powerful tool. Together we could highlight the disadvantages we shared.   

Inspire and challenge

Sharing my personal experience through storytelling has been very effective. I have been able to turn a disadvantage into an opportunity. Small Voice Projects is a story-based blog to collect and share personal stories. The stories are there to inspire and challenge. 

Personal stories like the ones told on Small Voice Projects and Leonard Cheshire’s Missing Voices can be one of the most powerful tools. Together these stories provide a powerful voice. They highlight key issues and barriers that can make a difference.

They can help influence change in people’s attitude, practice and ultimately policy. But most of all the stories told ensure that disabled people drive the story and are not just in the story.