Off to an interesting meeting today, to learn more about alternative communication
Matt, the main character in my new novel (Opus XIII) is suffering from cerebral palsy. This is a condition that comes in many “flavors”. You may have seen characters with CP on TV, e.g. the teacher’s son, Walter Jr., in Breaking Bad or the main character in the new Netflix show Special. Not unlike autism, CP comes on a spectrum and in recent years, thanks to advances in medicine, we are able to help people with CP to live much fuller lives than in the past. For some, the damage from CP is so big that they are almost completely disabled, in some cases, they can’t communicate verbally. This is where alternative communication comes in.
I’m about to learn more about alternative communication
I’m sure you’ve seen how Stephen Hawking used a synthesized voice to communicate with the outside world. Mr. Hawking didn’t suffer from CP, he had MND. Over the years, you can read it in the Wikipedia article, he used different forms of alternative communication. Here’s a snippet from his appearance on Star Trek TNG:
Today, I have a meeting I’m really looking forward to. It’s with an expert on alternative communication at Dart, which is our local West Swedish center for alternative communication here in Gothenburg. I can’t wait to learn about how methods are developed and to see how I might be able to help Matt to break out of his shell.
(Almost) every case is different
You see, each person with a severe communicative disability is different. Okay, they all can’t speak, some might even be deaf, which makes things even more difficult. As babies and toddlers, our brains quickly learn. We recognize our names, realize who’s a mom and who’s dad, recognize them by putting a face next to a name repeated. My six-year-old son just recently entered a phase where he’s fascinated to learn that pappa and daddy not only have “titles” but names, too. He finds it titillating to call us Alex and Hans. Endlessly amusing.
We also learn to recognize objects, as they’re shown to us: forks, teddy bears, spoons, cups. You get the gist. And a healthy baby will repeat those words and will continue to do so for the rest of their lives as they learn new words. Now imagine if you can’t speak. You can’t repeat what your parents are telling you to. You just can’t get those words over your lips. In time people will realize that something is wrong, and they might take you to a doctor to learn more.
In time, with a lot of research, specialists at places like Dart will be able to find a way to help you break through that barrier. But how?
Not reinventing the wheel
I won’t spoil the story for you, but Matt is particularly challenged. There are a great many ways to help patients with communication challenges. Some might be able to use their hands to move a device that looks similar to a computer mouse to point to objects or letters and make words. Others use an eye tracker to see what the individual is looking at. However, not every method works for every patient and to make voluntary movements (rather than erratic ones which are common in CP patients), it will take a lot of time to determine what might work and what might not.
Unfortunately, not every patient with CP gets help. A while ago a friend told me about someone they met out and about with their parents, a young woman, severely physically disabled, unable to communicate. Just imagine the horror of being trapped inside your body, unable to speak, unable to communicate, make yourself heard, tell the world about your desires, your dreams, your hopes. Would you go crazy? In a way, this is what interests me the most about Matt’s journey.
For me, as an author, I’m not up to the task of inventing a communicative method of my own. Hence my meeting today. I have realized, thanks to Matt, what works for him. Now I need to find out just how I can use that to help him communicate, for the first time in his life. I can’t wait for that day when I get to write those chapters. I’m not quite there yet.
Realistic, believable, credible
At the end of the day, I need the story to be realistic enough to be credible to the audience, believable. Unlike the snippet from StarTrek above, this isn’t science-fiction. I can’t just “pretend” this or that, can’t simply attach a diode to Matt’s head which allows him to communicate freely. We’re just not there (yet?) The story I write is about Matt, it’s about someone who–for now–is relying on me to speak on his behalf. I want to write a story about a human being with a particular set of challenges and it won’t be until the end of the book that Matt gets to speak within quotation marks with his own words. Until then, he relies on me, on the things he tells me.
Books are important. The stories we tell are about seeing ourselves through the eyes of someone else. We want to read about “ourselves”. We crave to have our own life validated through the characters in the books we read. We need to see that we are not alone, the only one in the village. This is particularly important for minorities. And in a way, we’re all part of a minority, some may just be smaller than others. Sex, gender, age, creed, skin color, ethnicity, hair color, glasses, LGBTQ, disabilities, etc. All of these in infinite combinations. We’re all some of that, somewhere, somehow.
So is Matt. This may be his story, but it has to be relatable enough for abled people to maybe learn something and for people with disabilities to feel validated, seen. Maybe that’s a tall order. Maybe I’m not the right person to write about this (I’ve had this argument before), but I am an author. It’s my job to tell other people’s stories. Research helps me make sure I get it right.
I can’t wait to present you with this story, eventually, when it’s done. I expect it to be released next spring. Until then, we have the finale of The Golden One to look forward to.