Charlie is two and a half years my senior, my favorite person in the world and easily one of the biggest know-it-alls on the planet. Briefly in our mid teens he insisted that I call him my “frother” (pronounced fruh-th-ah) which meant half father and half brother. I soon discovered that directly translated this indelicate term meant he was allowed to tell me what to do. This, of course, included all of his chores and most of his homework. As you can imagine I rebelled (as all younger siblings are wont to do) and "told on" him.
Unfortunately it didn't really work. Our parents thought he was hilarious and so to this day Charlie refers to himself as my frother whenever he wants to boss me around or put the squeeze on our parents for a new X.box game. It works ninety percent of the time, I'm sad to say.
It is many years later now and both my frother and I have grown up and become "game fully" employed. Charlie works at a plant nursery on the coast of NSW where he gets to boss people around for most of the day, and I am doing my phD in Queensland where I live with my partner and best mate.
My phD, Charlie reckons, is all about him and in some respects he's not far wrong.
I am studying the role of intellectual disability in narrative fiction with a focus on first person perspective and down's syndrome. But I am also a fiction writer and so spend most of my days trying to write a novel partially told from the perspective of a teenage boy with Down syndrome.
Mind you, it's been frustrating. For a myriad of reaseons, the least of which is the actual work. the actual work I love, I open the musty smelling textbooks and breath it in. What is frustrating in the near daily basis I am met with some form of ignorant comment along the lines of "they're always so sweet aren't they... the downs".
Case in point is an actual conversation that happened to my mum recently, in the presence of my uber dignified 30 year old brother at a restaurant.
"Oh my sister had a downs."
My mum gave the man a withering stare (I've seen it, it's pretty scary). "Pardon?"
"The downs people, lovely aren't they. Always so rhythmic."
When my mum told me this my mind became a flood of images of my entire musically inept tone deaf family (in which I include Charlie and myself) dancing like crazed kookaburras at the last family get together.
"What did Charlie think of that?" I asked her.
"He was busy with his food."
"Did you say something?"
"To who?"
"The people?"
"No, I didn't say anything. People like that aren't worth it."
That's when I wondered if people like that were “worth it”? And who are the people like that? Are they just the ignorant suburban middle class who think "downs" people are sweet and rhythmic, or is it more insidious?
So I said, "Mum, you should have said something. Particularly in front of Charlie."
“Perhaps I should have, I don’t know, Sarah, I fight the battles worth fighting.”
So, I guess that this is what my blog is basically about. Joining those battles in some small way and trying, as best I can, to join the voices of change. I’ll write about what I read on the road to my phD (both fiction and non-fiction) and why these books should matter in the building of opinions of "people like that".
