Sandra is a happily married mother of two teenage boys, an avid reader, compulsive writer, and rabid chocoholic. Her work has appeared in Jim Baen’s Universe, Ideomancer, Andromeda Spaceways Inflight Magazine, the anthologies Fear of the Dark and Triangulation: Last Contact, and as podcasts on The Drabblecast, Pseudopod, and Tales to Terrify. She is a graduate of Clarion West 2010, and associate member of the SFWA.
She is currently working on her second novel.
You are reading a story, a real page turner, and come across a factual error, perhaps directly related to yourself or someone you know. That’s odd, a touch annoying. Was the writer misinformed? No matter. You keep reading, and soon come across another error. This has gone from annoying to downright insulting. Does the writer know anything about this subject? Did he/she do any research at all, or is it a bad case of sloppy writing? Page turner or no, you set the book down and don’t pick it up again.
Let’s play a game. Be honest; no asking someone else or looking up the answers. Here we go:
- Peter Dinklage, the actor who plays Tyrion Lannister on HBO’s GAME OF THRONES, has what form of dwarfism?:
A. Diastrophic Dysplasia
C. Growth Hormone Deficiency
- Hypotonia is a condition often associated with:
A. Cerebral Palsy
C. Non-specified seizure disorders
- Cri du Chat is:
A contagious viral fever that results in over 200 infant deaths a year, thought to originate in Southeast Asia.
B. A genetic condition involving a deletion of part of the 5th chromosome, resulting in global developmental delays.
C. A genetic condition where-in each cell carries an extra 6th chromosome, resulting in developmental delays and significant digestive tract deformities.
D. A non-dairy coffee creamer.
- What is a cochlear implant?
A. A mechanical heart valve developed in 2012 by Dr. Phal Tinyuen used on premature infants.
B. A neural implant used to treat severe infantile spasms.
C. An electronic hearing device used to stimulate nerves inside the inner ear.
D. A fuel injection system for Japanese cars.
- Pica is:
A. Abnormal mineral deposits that develop on the bones of the hands and feet, causing excruciating pain and swelling, symptomatic of gout.
B. Scarification of the retina caused by hardened capillaries, resulting in visual impairment.
C. An eating disorder characterized by the consumption of non-food substances with little or no nutritional value.
D. A small South American rodent commonly found in the Andes.
How did you do?
Representation matters; more importantly, informed representation matters. When writing the other, no matter how other is defined, writers owe it to the readers and the population they are representing to provide the most accurate, informed portrayal they possibly can. Not only does informed representation lend to the verisimilitude of a work, it also opens doors to the reader, allowing them to step into the world of the pages.
What does representation look like in speculative fiction? Cat Rambo’s “Long Enough and Just So Long”, Elizabeth Moon’s The Speed of Dark, Chris Beckett’s Eden books, Michael Moorcock’s Elric of Melniboné books, George R.R. Martin’s A Song of Ice and Fire series (the basis for The Game Of Thrones), Mishell Baker’s Borderline, my own “The Smell of Victory”, Anne McCaffery’s The Ship Who Sang series, and, and, and. There are countless stories and novels with special needs characters out there, but not near as many as there could be and not all of them written with an eye towards informed representation.
It’s my hope to shed a little light on the world of special needs and turn aside the stereotypes and tropes in favor of fully realized characters. In later installments I’ll give a general overview of various conditions and syndromes, discuss conversational language and medical terminology, offer links of interest, and share interviews with those with special needs and their family/caregivers. Why? Both of my sons have special needs. I survived a stroke in 2011, I suffer from PTSD, am bipolar, and deal with other mental and emotional health issues. My husband struggles with depression. We are part of the special needs community, and deserve to be shown as we are, not as an assumption or incorrect description.
I’m far from an expert; I can’t detail every instance of every condition, so I’ll need your help to keep me informed, to point out where I got it wrong. Do you have a particular SpecFic recommendation, good or bad? And what would you like to know more about? Don’t be shy. I want to hear your story in your own words, and I’ll tell you my story in return.
So, come along for the ride. You might just learn something, and that’s when the fun begins.
The answers: B, A, B, C, C