“I’m not really looking to change, Mom.”
“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”
Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”
Alice continued. “I can’t believe you would even consider not being part of this study.”
“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”
Alice’s schoolteacher handwriting greeted Gretchen when she flipped through the mail that evening. It was a floridly pious Mother’s Day card with a letter enclosed. Her mother must have sent it right after Gretchen had called about the board meeting fiasco. Oh Alice, Gretchen snorted pleasurably. I couldn’t have picked a better card myself.
Underneath the card’s summary appreciation for maternal sacrifices, physical and emotional, Alice had written, “Thought you might like to see the enclosed item right now. I think it confirms that we are related. I cannot take credit for why you are who you are but I did have a hand in it. Then again, you were always a rotten child. Not that I had anything to do with that. Love, Mom.
The letter was her mother’s same handwriting. Cheered, Gretchen set to reading it. It was dated from May 1970 and addressed to a Desmond Wallace, Chair of Fundraising Operations for the National Cerebral Palsy Association. Oh dear.
As the West-Hesperidan Free Clinic’s Administrative Manager, Gretchen was the closest thing they had to fundraising staff now that their Director was on stress leave. She was supposed to represent the clinic at these house party things but here she was wandering on the edges, again, frankly worn out just from hauling herself in the door. Here was a question: Why does philanthropy so often require climbing stairs?
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!