Taking centre stage

I have been surrounded by disability and chronic illness all my life. So why is it I don’t see this reflected in fiction as broadly as I do in the real world?

For a long time, the medical profession thought my mum might have multiple sclerosis, until they discovered it was a slipped disc pressing on her spinal cord. My Uncle John had arachnoiditis, a condition of the spine, caused by a fall from a roof, and the subsequent tests resulted in a long-term issue. I lost part of my vision in my right eye, aged 17, caused by uveitis and have been on tablets to prevent the inflammation ever since.

The conditions that have entered my life for various reasons have shaped my world. Often beyond words. These individuals have defined what it is to be brave and outstanding and overwhelmed and tremendous and unique. All of these family members (myself included) have been characters within their own stories. Without doubt, these are the people who are my absolute heroes. These are the people I want to champion and read about. The experience of having a disabled mother led to me becoming a physiotherapist, adding to the breadth of wonderful people, who happen to be disabled, that I’ve met. So where are these amazing people represented in the pages of fiction?

I know they are out there. But why aren’t there more? Eighteen per cent of the working-age population are disabled, but I’m not seeing this percentage reflected in the adult fiction I read. One way for authors to check whether their books are representative is the Fries Test, where the writer answers three questions:

• Does a work have more than one disabled character? 
• Do the disabled characters have their own narrative purpose other than the education and profit of a non-disabled character? 
• Is the character’s disability not eradicated either by curing or killing?

If you haven’t answered yes to all three questions, there’s room for improvement. One of the things I often come across are disabled people as secondary characters or as a plot point. I want to see these characters at the forefront. Centre stage is where they belong.

One book that has done a beautiful job of this is Hope Nicely’s Lessons for Life by Caroline Day (Zaffre). It’s a great example of a book passing the Fries Test. It follows a character with Fetal Alcohol Spectrum Disorder (FASD) who joins a writing group, determined to write her life story. This book really sang to me on a personal level, but more so because Hope wasn’t a bit-part, she was the main event.

I asked Day what research she had done for Hope Nicely. “I did a lot of research. The book itself came to me very quickly but I read up extensively about FASD, to be sure that my depiction was both respectful and authentic. I think that if you are doing justice to the subject, particularly when it is not your own lived experience, then the research must be extensive.” I echo her comments, as research is paramount. My most recent release, The Girl Who Couldn’t Leave, involved a character with agoraphobia, and a good friend who has the condition happily answered questions and did a sensitivity read to make sure I had portrayed the character’s experience accurately. 
To help meet the Fries Test, I suggest the following:

• Speak to people with the lived experience you are trying to portray. Only ask them once, and respect the fact they may not want to disclose to you. Having said that, I have only ever found that people want to share their stories in whatever way they can.
• Contact charities and groups connected to what you are trying to portray. They are usually glad to help.
• Speak to specialists in the subject. I have used old contacts when suitable, but even when I haven’t had any, I’ve been able to find people willing to help me with any unusual questions that might crop up.
• Make the stories hopeful. I primarily write happy endings, so this might be a personal wish, but as with the Fries Test, if you are killing or curing, are you giving a just representation?

I have written about characters with multiple sclerosis, agoraphobia, autism, cancer and broken heart syndrome, alongside other medical conditions. I’m going to continue adding to the list, but I also hope to start reading more disabled-character driven stories. It makes me sad to think that I am over half-way through the year and have only come across one stand-out disabled lead character. I strive to make sure I’m reading as diversely as possible, so I want to read characters able to fill this gap. I hope this has helped you consider whether you’re meeting that need with what you’re currently writing, publishing and selling. 

Catherine Miller was an NHS physiotherapist, but for health reasons retired early from this career. She is now an internationally bestselling author of contemporary fiction. Her latest book is The Girl Who Couldn’t Leave (Bookouture, out now). You can follow her on Twitter @katylittlelady.