A guest post by John Sanders
A long time ago, in a land far away, the idea of Northwick Bear was the solution to several small challenges…
At the time I was chairman of the Nystagmus Network (NN). That meant I had to write a report about the charity’s annual general meeting and open day for the NN newsletter.
I was also working as a journalist, so I had strong views about many of the charity AGM reports and updates I saw. The kind that begin: “As I sit here writing this report, the rain pattering on the window panes …” Or perhaps: “It’s hard to believe that it’s already 12 months since I last wrote to you …”
Delve back far enough and you’ll probably find I wrote a few intros like that myself. But now I knew better. Who – other perhaps than a meteorologist — wants to know if it was raining when you sat down to write something? And we all know that a year can fly by. Clichés kill — as the sub-editors at my day job were keen to remind me.
So, the least I could do as a hack who earned a living from writing was come up with something different and maybe even entertaining for the NN newsletter. We’d raffled a bear at that year’s open day in Northwick Park Hospital, so, I wrote up the meeting from the bear’s perspective and called him Northwick. That – in a jar of honey – is how Northwick was born.
Initially, I didn’t plan to write any more Northwick Bear stories. It was simply a way of solving the problem of how to write a piece for the newsletter. The first story had a mixed reception – some people liked it and some didn’t. Those who liked it flattered and nudged me enough to write another Tale of Northwick and then another.
Writing Northwick stories did help meet another challenge that had been niggling me for years. It’s all very well having information sheets and booklets and fact sheets and FAQs and lists about how nystagmus affects us and what we can do about it; but they only tell part of the story.
Short of having a disability yourself, I can think of two ways to begin to understand what it’s like to live with MS or depression or whatever. One is to listen to someone who has that disability and the other is through stories – whether as a film, book, play or other art form. I’ve learnt more about autism, living with facial deformity or as an elective mute from reading “The Curious Incident of the Dog in the Night-time”, “Wonder” and “Mouse and the Cossacks” than from any number of fact sheets.
Film and TV can be equally powerful in helping us understand the subtle consequences of a disability. For instance, “Rain Man”, “My Left Foot”, “Breaking Bad”, “The West Wing” and “The Bridge” are primarily about disability or feature characters with a disability (autism, cerebral palsy and deafness).
So, back to the Nystagmus Network, the charity whose aim is to raise awareness. We had plenty of fact sheets, but where was the fiction, the drama, the song about living with nystagmus? No-one else had stepped forward, so I decided it was time for Northwick to emerge fully from hibernation and talk about the daily nuisance that is nystagmus!
Some may argue that there’s no point in books, films, TV series or songs featuring disability. I disagree. You can say and do things in these media that would be hard, or even impossible, in factual information. For instance, Northwick and his friend Frank talk a lot about their emotions and how their flickering eyes often make them feel sad, which would be tricky to convey in factual literature.
It’s hardly surprising then that families tell me the Northwick stories help them talk about nystagmus. The stories are certainly as much for parents as well as for their children. Many parents don’t know anyone else with the condition when their child is diagnosed, so the Northwick stories enabled them to learn about nystagmus alongside their children.
That’s another important point to remember: children with nystagmus have little or no idea how differently they see the world from most other people. They often find out from Northwick that they don’t see as far as most other people or need more time to see. But – very importantly – thanks to Northwick, they also learn that they are not alone in having flickering eyes.
Similarly, the stories about Northwick, Frank, his family and friends give parents and other family members an insight into what it’s like for their children, brothers, sisters, nephews, nieces, even uncles and aunts who see the world differently. The stories provide a context for talking about nystagmus which otherwise may not exist.
One of my favourite anecdotes is from the mother of a child with nystagmus. She’d left a copy of “The Tales of Northwick” book lying around in the living room and a family member staying the weekend picked the book up and started reading. Later on they told the mother that, until that point, they had no idea just how much nystagmus affected her son.
I don’t make any great literary claims for the Northwick Bear stories. It’s enough for me to know that they’ve helped some families affected by nystagmus over the past 20 years or so and still help others today. Looking ahead, I hope someone else will one day make a much better job than I have of telling nystagmus stories that will both entertain and educate.