What is it like to live with a disability? What do I want other people — younger people — to know? What do I see ahead? What are the ethical boundaries for telling other people’s stories?
These are some of the excellent questions posed by DearJulianna, #CrippingtheMighty, and #TheFutureIsDisabled. (Carrie Ann Lucas’s blog post currently carries the coveted — by me — title of, The Blog Post I Love Because It’s So Well-Written I No Longer Feel Like I Need to Take On This Difficult Topic Until I Want To.) People with disabilities are writing, reading, producing, performing, and arguing like nothing I’ve witnessed in 50 years. It’s wonderful and it makes me want to hide out under a blanket for a while and just let my mind wander.
When I can get enough mind-wandering time clocked, I work through stories that are the made-up kind: fiction. They’re stories that are “about” my life the way jambalaya is “about” sausage, rice, and a whole bunch of other stuff. I can’t seem to tell the truth without lying, which is “fiction” in a nutshell and why Hermes, that liar (and inventor of lyres), is the god of storytelling.
In terms of privacy, even badly written fiction is different from posting a detailed or disparaging description of your child who has a disability. But in thinking about who gets to write about who, and how, and why, I remembered a problem I’d had with conveying certain information about my main character, an adult woman with a disability. Me! Not me!