Hey guys! Another Tomorrow Comes Media tour for your reading pleasure. This time I have the wonderful Jason S. Walters on the blog talking about how one person’s book about his life with Down syndrome helped Jason to structure his own science fiction novel, Nakba, featuring not one but two characters living with Down syndrome. It’s a really interesting read!
Earlier this year I went on a quest.
Well, okay, earlier this year I drove a truckload of roleplaying books up to GameStorm in Vancouver, Washington. (Because I’m a big, old grognard-nerd and driving truckloads of roleplaying game books is part of what I do.) But while I was in the Portland area I went on a quest. Specifically, I journeyed over the river to that magical place which we in the West call Powell’s Books: a used bookstore so vast that you’re issued a map when you enter the establishment, the walls are color coded by general topic, and there are manned kiosks with helpful clerks every hundred yards or so. Deep in the bowels of this bibliophilic bacchanalia, so high up on one of the Parenting & Childcare stacks that I had to recruit a teenager with a ladder to reach it, marked down to $1.00 in preparation for its final trip to a dumpster, I located a dog-eared 1967 American fifth printing of the British semi-autobiography The World of Nigel Hunt: The Diary of a Mongoloid Youth.
Why do I call it a “semi-autobiography?” Because the little 126 page document (of which only 81 or so pages was written by Nigel) doesn’t cover all, or even very much, of his life. It’s more like a series of prose impressions or snapshots, “taken” during his various adventures, misadventures, and travels with his parents, and in the great tradition of English prose fragments. It’s an interesting document, both in terms of some unique, almost Joyceian uses of the English language (my favorite is “and when they turned the corner up came their oompahs and the miserable trombones and blowed me in the middle of nowhere.”), but also because it displays the rather traditional literary device of a young man striving to be independent – but in this case despite of a severe disability (which he is, it should be noted, aware of). It’s also striking that Nigel shows very little capacity for many of the literary conventions that we’ve come to associate with such documents, like cynicism, irony, and dark humor. He literally tells it like he sees it, without interjecting any of the typical world-weariness into his work. (Indeed, he probably wasn’t capable of doing so.)
To the best of my knowledge The World of Nigel Hunt is the only book ever penned by a person with Down syndrome without the help of a ghost writer; Nigel had only the sort of minimal help from his father and his publisher that any new author receives. And, even with ghost writing, there have only ever been a tiny handful of books by people with Down syndrome. I own two others: Count Us In by Jason Kingsley and Mitchell Levitz, and A Special Kind of Hero by Chris Burke. Both are ghost written – though it must be said that Mitchell Levitz’s afterword to the 2007 edition of his book shows so much wisdom and ability that one rather wishes he would write his own book.
So I particularly treasure The World of Nigel Hunt. Not only is it one of my few literary windows into the soul of my own daughter with Down syndrome, but also because it became one of the sources I used to craft two of the characters in my upcoming science fiction novel Nakba: Cassidy Brazo, one of the three leaders of a small community founded to shelter people with trisomy and monosomy disorders, and Mitchell Green, the “captain” (he’s more like an ambassador) who pilots one of their two ships on trade missions. Both of these characters have Down syndrome, and trying to get their inner voices right was a real challenge. I spent a lot of time worrying about “Goldilocks” stuff: that sounds too smart. That sounds too stupid. It that just right? How do you judge the inner voice of someone whose cognition literally functions differently from yourself? And, with advanced artificial intelligence handling the duties of translation between different peoples, how much do speech impediments and odd sentence structure even matter when expressing oneself?
These are the questions that entering the World of Nigel Hunt helped me to answer.
Jason S. Walters is an author, essayist, and publisher best known for running Indie Press Revolution (IPR), a distributor of micro-published roleplaying games. He is also one of a small group of investors that purchased Hero Games in 2001, and serves as its general manager. After owning a San Francisco bike messenger service for 15 years, he and his wife Tina moved to Midian Ranch: a homestead near the town of Gerlach, Nevada. It is also the location of IPR’s warehousing complex. They have a daughter with Down syndrome named Cassidy and animals too numerous to mention.
A thousand years ago humanity’s dissidents fled, leaving behind a peaceful, unified world content to exist in a state of perpetual hedonism. Then a daring escape plunged civilization into chaos, forcing its rulers to expand outward to maintain order. Now all that stands between a newly imperial Earth and the rest of the solar system is a loose coalition of Maasai tribesmen, cloned feminists, shape-shifting humannequins, and vengeful Berbers led by the least likely hero in human history: a young woman with Down syndrome and a bad attitude.
I absolutely love this post! What books have you read about people living with Down syndrome and other disorders? Whether fiction or non-fiction. And doesn’t Nakba sound awesome?